We just got home from a full day at Duke again. And unfortunately, my hemoglobin level was not high enough yet. It wasn't even as high as I thought it would be. I was pretty upset when I found out. It was an 8.7, and it needs to be a 9.0 in order to begin the clinical trial.
2.5 weeks ago, it was 8.1 (on a Monday). That day, they gave me an injection to boost the hemoglobin level. The next Monday, it was 8.4. Then Friday of that week (last week), it was 8.6. Today (one week later), it had only gone up to 8.7.
As my nurse said, my body is still recovering from surgery, it's still dealing with the effects of radiation, and she did say that having a cold this week could potentially hinder the recovery process somewhat. Sooo.... they decided to give me another injection. Ouch. They couldn't use my port for it, and the medicine is pretty painful -- although it didn't seem quite as bad today as it was that first time. They sound very hopeful that this injection will get me to a 9.0. They're going to wait until next Monday (Nov. 3) to check it again. So that's another 1.5 weeks. Because of the factors like recovering from surgery and radiation, they don't see any problem with holding off a bit longer before doing anything. So that's the plan. I have 1.5 weeks now until my next hemoglobin test, and they are hopeful that I will increase to the 9.0 level by then. But they are going to continue to monitor my hemoglobin level even after I begin the clinical trial. And they reminded me today that my low hemoglobin is contributing to fatigue (the radiation effects are as well). So along those lines... I'm off to take a nap now before dinner!
Thanks for the prayers!!
Friday, October 24, 2008
Thursday, October 23, 2008
Broken Arm and My Status
I think the broken arm caused some confusion in the last post, so I wanted to clarify... :) We did already know that I had some minor fractures in the top of my left arm (as of the day after I got out of the hospital a month ago). But we just hadn't pursued it further yet, as there were bigger fish to fry. But yes, it is cancer related. I have bone metastasis in my upper left arm (cancer in my bones -- although this is still "kidney cancer" and not "bone cancer"). And that is why the bone fractured -- because of the cancer.
So here is my current status:
I had a tumor the size of a fist in my right kidney. This was all first discovered on Sept. 5. So on Sept. 19, my right kidney was removed -- tumor and all! Praise God that it was able to be removed!!! The urologist needed to see all the scans before he could make a determination on whether it was safe to remove -- or how to remove it, I guess. But that process went very well.
Then I also have tumors in my pelvic and hip area. The largest is 4 cm. There are a few of them in that area, and they are causing 2 pinched nerves (pushing on the nerves at the base of my spine). This would explain all the pain I was having since April in my lower back and then eventually down my legs!! Anyway, these tumors cannot be removed by surgery. So instead, I had 3 weeks of radiation to kill these. The radiation does damage to the cancer that will take effect over several months. It's uncertain as to how much damage it will do, but it will not completely eliminate the tumors. But in the meantime, the radiation will also potentially still give me side effects such as fatigue. Also, 80% of radiation patients will be out of pain within 8 weeks. It has been 3 weeks for me thus far since I finished radiation. I am pretty much out of pain! But I'm also on a lot of narcotics and also a new prescription specifically for nerve pain. At this point, we're not sure how much the pain is improving due to radiation or just due to all the meds I'm taking.
Then I also have the bone metastasis that I referred to being in my upper left arm. That also exists in my tailbone area, in my mid-spine, and on my skull. As Steve said in a post long ago, "It grows there, and like roots into the sidewalk it chips away at the bone." It isn't bone cancer (that is inside the bone marrow). Instead, this is on the surface of the bone. And it has fractured my upper left arm and my tailbone (it's not really my tailbone -- it's a little higher, but it's the area that I always assumed was the tailbone). So that also explains a lot of the pain I was having this summer! Some of this was also handled by the radiation in September. They did radiation on my upper arm. I think they also covered that lower spine (tailbone) area with radiation. But they did not do anything to the mid-spine and skull. Those were found later, and I think they are smaller regions and they are hoping they can be covered by the next type of treatment I will soon have. The skull part scared me to death when I found out. But my oncologist has now assured me that I am at no increased risk for a brain tumor simply from the location of the cancer on my skull. Praise God!!
And finally, I have cancer in my bloodstream from the tumors. This is how it spread from the kidney to the other locations in my body. The ideal situation, of course, is to catch cancer before it leaves its initial location. But there are no nerves around the kidney, so kidney cancer is often undetected -- until there is a sign like blood in the urine. I didn't ever have any signs (although the urologist did find blood in my urine -- but it wasn't something I could see myself). My first sign was lower back pain...which was, of course, after the cancer had already moved on past the kidney and into the bloodstream and to my lower back area.
So this next round of treatment is meant to get the cancer that remains in my body (which is everything except the kidney tumor). Chemotherapy doesn't work on kidney cancer. So instead, we will be using a "targeted therapy" drug to attack the cancer. That means I won't get all the nasty side effects of chemo. But there still may be side effects. We are incredibly fortunate that there is an oncologist here at Duke who is one of the best researchers in kidney cancer! He only sees patients 2 days per week and does research the rest of the time. And he is currently doing a clinical trial for the combination of 2 drugs to fight kidney cancer. So that is what he wants me to participate in. And we signed up to participate last week. Now I just need a high enough hemoglobin level in order to be allowed to begin. And that is our prayer for tomorrow's blood test!! If it is high enough, I can start the clinical trial on Monday. If not, we need to make a decision on whether to keep waiting -- or whether to just take the one single approved medicine and get started on fighting this cancer further using another route. In the meantime, we are just waiting for me to heal from surgery and radiation -- but it's about time to start fighting again!!
One unfortunate side note to point out... The clinical trial (which seems to be our best bet right now) is not expected to eliminate the cancer completely. It is just hoped that it will control it. And the hope is that it will control the cancer for a period of time until a cure is really found, which is hoped to be not too far away. In the meantime, we just have to take things one day at a time. And trust in God.
So here is my current status:
I had a tumor the size of a fist in my right kidney. This was all first discovered on Sept. 5. So on Sept. 19, my right kidney was removed -- tumor and all! Praise God that it was able to be removed!!! The urologist needed to see all the scans before he could make a determination on whether it was safe to remove -- or how to remove it, I guess. But that process went very well.
Then I also have tumors in my pelvic and hip area. The largest is 4 cm. There are a few of them in that area, and they are causing 2 pinched nerves (pushing on the nerves at the base of my spine). This would explain all the pain I was having since April in my lower back and then eventually down my legs!! Anyway, these tumors cannot be removed by surgery. So instead, I had 3 weeks of radiation to kill these. The radiation does damage to the cancer that will take effect over several months. It's uncertain as to how much damage it will do, but it will not completely eliminate the tumors. But in the meantime, the radiation will also potentially still give me side effects such as fatigue. Also, 80% of radiation patients will be out of pain within 8 weeks. It has been 3 weeks for me thus far since I finished radiation. I am pretty much out of pain! But I'm also on a lot of narcotics and also a new prescription specifically for nerve pain. At this point, we're not sure how much the pain is improving due to radiation or just due to all the meds I'm taking.
Then I also have the bone metastasis that I referred to being in my upper left arm. That also exists in my tailbone area, in my mid-spine, and on my skull. As Steve said in a post long ago, "It grows there, and like roots into the sidewalk it chips away at the bone." It isn't bone cancer (that is inside the bone marrow). Instead, this is on the surface of the bone. And it has fractured my upper left arm and my tailbone (it's not really my tailbone -- it's a little higher, but it's the area that I always assumed was the tailbone). So that also explains a lot of the pain I was having this summer! Some of this was also handled by the radiation in September. They did radiation on my upper arm. I think they also covered that lower spine (tailbone) area with radiation. But they did not do anything to the mid-spine and skull. Those were found later, and I think they are smaller regions and they are hoping they can be covered by the next type of treatment I will soon have. The skull part scared me to death when I found out. But my oncologist has now assured me that I am at no increased risk for a brain tumor simply from the location of the cancer on my skull. Praise God!!
And finally, I have cancer in my bloodstream from the tumors. This is how it spread from the kidney to the other locations in my body. The ideal situation, of course, is to catch cancer before it leaves its initial location. But there are no nerves around the kidney, so kidney cancer is often undetected -- until there is a sign like blood in the urine. I didn't ever have any signs (although the urologist did find blood in my urine -- but it wasn't something I could see myself). My first sign was lower back pain...which was, of course, after the cancer had already moved on past the kidney and into the bloodstream and to my lower back area.
So this next round of treatment is meant to get the cancer that remains in my body (which is everything except the kidney tumor). Chemotherapy doesn't work on kidney cancer. So instead, we will be using a "targeted therapy" drug to attack the cancer. That means I won't get all the nasty side effects of chemo. But there still may be side effects. We are incredibly fortunate that there is an oncologist here at Duke who is one of the best researchers in kidney cancer! He only sees patients 2 days per week and does research the rest of the time. And he is currently doing a clinical trial for the combination of 2 drugs to fight kidney cancer. So that is what he wants me to participate in. And we signed up to participate last week. Now I just need a high enough hemoglobin level in order to be allowed to begin. And that is our prayer for tomorrow's blood test!! If it is high enough, I can start the clinical trial on Monday. If not, we need to make a decision on whether to keep waiting -- or whether to just take the one single approved medicine and get started on fighting this cancer further using another route. In the meantime, we are just waiting for me to heal from surgery and radiation -- but it's about time to start fighting again!!
One unfortunate side note to point out... The clinical trial (which seems to be our best bet right now) is not expected to eliminate the cancer completely. It is just hoped that it will control it. And the hope is that it will control the cancer for a period of time until a cure is really found, which is hoped to be not too far away. In the meantime, we just have to take things one day at a time. And trust in God.
Wednesday, October 22, 2008
I'm Improving!!
I'm really improving a lot lately!! :) First of all, no, I did not catch the stomach bug that both Kien and Steve had in the past week. Hooray!! But both of them ended up with colds after the initial sickness...and as of this morning, I do have that. :( Bummer. But at least it's not a stomach bug!! And as for an update on the real bugs in Kevin's room this past weekend... apparently it's not really bed bugs afterall. It's still a mystery at the moment! (He was bitten almost every night last week, and we've now had an exterminator come to inspect and not find anything.)
The xrays on Friday showed that my left arm is truly fractured at the top (my arm is broken at exactly the same spot that Kevin broke his -- but it's the opposite arm). The xrays are going to be reviewed by an orthopedist at Duke, so I'm not sure what will happen next. But in any case, I still can't use my arm. I can reach up to my face (that was an improvement a couple weeks ago), but I can't fix my hair. I'm always wanting to pull it back in some way, and that takes 2 hands. So Steve has had a lot of lessons on barrettes and pony tails. ;) But I finally got frustrated enough to get it cut short! I had 3-4 inches cut off today! Hooray! :) So hopefully this will be much easier. I was kind of holding off on doing it, because I felt like cutting my hair for ease of fixing it was like caving in and seeming like a sick person (like "Steel Magnolias" or something). But reality is that I really like it -- and it will make my life easier. :) So here is a picture of me with the boys tonight with my new haircut... Kevin's immediate comment was, "It's much better!" :)
Kien had 4 shots this morning at the pediatrician, so that's why he does not look like a happy camper!! :( And we're posing by some flowers and fruit that arrived today for me from Steve's work!! :)
Speaking of Steve's work, he started back last week after taking off 5 weeks to be with me and help me. He is wonderful!! :) Anyway, with my 3 days of appointments last week, he was in and out of work. But this week, he has been much more back to work again. And we have a great temporary nanny to help with the boys, as my mom is leaving tomorrow. My mom has been here for 2 months!! She is wonderful too!!! :)
As for my improvements... Sunday marked one month since my surgery to remove my kidney. When I look back at the blog posts from exactly one month ago, I'm amazed at how far I've come!! Wow!!! My mom says she sees me getting better daily now. I'm going up and down the stairs with no assistance these days (it's still somewhat of a strain for me to go up and down -- but not much of a deal at all compared with a couple weeks ago!!). And I'm spending most of the time downstairs now. The chairs in the family room don't hurt anymore! I've even been caught getting down on the floor to play with Kien!!!! :) :)
I definitely needed help getting back up again though! Then over the past week, I've been daring more and more to get things from off the floor -- as long as there is a piece of furniture nearby to use to pull myself back up. Yesterday I did have some difficulty, but I made it back up on my 3rd attempt. ;)
The past few days, I keep getting tempted to pick up Kien, but I'm not allowed to do that yet. But the mere fact that I'm tempted to do it shows me that I'm improving! Just a week or 2 ago, the thought would not have entered my mind!! Now I have to really remind myself that I'm not allowed to pick him up. That's a big bummer. :( I hope I can do it again soon... But I am now his primary bottle feeder again!! :) And I've taken over a good part of his high chair feeding in the past few days too!
Another improvement is that in the first couple weeks after surgery, I was having a lot of panic attacks -- and one of the causes was a lot of noise. So I couldn't stay downstairs very long due to the noise made by the boys. But now it doesn't bother me at all!! :) I don't experience any anxiety from the noise level downstairs. (I switched to a new anxiety medication, which probably is helping.)
Another area that would cause anxiety was the car. And finally last week, this started to improve too!! Our drive to Duke on Friday was the first time that I have been able to chat in the car on the way there. I have often needed to ask Steve to even stop the car somewhere along the way so I could get some air. I was not doing well with the long car ride!! (40 minutes) But I seem to be pretty much over that problem now too. Hooray!! :) I'm still not driving anywhere myself though, mainly due to my broken arm.
Last Friday in the car on the way to Duke, I commented that I was feeling so much better overall emotionally than the week before. The previous week, I was feeling pretty depressed. So I said that I must be doing better due to all the appointments I was having last week -- and I had specific things to focus on. This all boiled down to me saying that I guess it was better for me to have minor surgery that week than to lie around in bed like the week before!! ;) HA!
I'm now officially back to sitting at the kitchen table to eat with the family. :) I just sit on a pillow, but that is now adequate to keep me out of pain. Hooray!! My pain is very rare these days. Yay!! The most pain I have is in my left arm from time to time (and sometimes in the night when I end up leaning on my left arm). My walking has improved too. Last Monday at Duke, we didn't even get a wheel chair!! :) We did need it for the longer walks at Duke later in the week, but my walking has gotten much better! Yesterday I even walked around Target with my mom and then part of a mall in the evening with Steve!! That was pretty major!!! :) And I wasn't even in pain from the walking or the standing around that we did. Praise God!!!! I'm getting better!!!! :) :)
And as for the yucky stuff, everyone says my incision looks great. And yes, I do even look at it myself a bit now too. ;) Steve has started putting cream on it for me, and it has been grossing me out to feel how long it is. yuck!! So I now pretend that he's putting suntan lotion on me instead. ;) ha!
The port-a-cath incisions have really improved too since last week. It's really not sore anymore, and I'm told that it "looks great." But a nurse told us last Friday that apparently I'm allergic to the tape they were using to bandage it. Oops. The port is under my skin, but I have now seen and felt the bump where it's located -- and I've lived to tell the tale. ;) ha! I didn't even faint. (But Kien's head tends to lean against it when he's on my lap!) Apparently it really is a good thing that I got it, because a nurse told me Friday that the computer system says for me, "very poor venal access." yikes! Well, no worries anymore! :)
So overall, I'm doing great and really improving!! Thanks so much for all the prayers!!! :)
Friday, I go back to Duke for my next blood test, and we're praying that my hemoglobin will finally be at the right level. :) I will also have a couple more tests that day, but it should be a shorter day than last Friday. Thanks for the prayers!!! :)
The xrays on Friday showed that my left arm is truly fractured at the top (my arm is broken at exactly the same spot that Kevin broke his -- but it's the opposite arm). The xrays are going to be reviewed by an orthopedist at Duke, so I'm not sure what will happen next. But in any case, I still can't use my arm. I can reach up to my face (that was an improvement a couple weeks ago), but I can't fix my hair. I'm always wanting to pull it back in some way, and that takes 2 hands. So Steve has had a lot of lessons on barrettes and pony tails. ;) But I finally got frustrated enough to get it cut short! I had 3-4 inches cut off today! Hooray! :) So hopefully this will be much easier. I was kind of holding off on doing it, because I felt like cutting my hair for ease of fixing it was like caving in and seeming like a sick person (like "Steel Magnolias" or something). But reality is that I really like it -- and it will make my life easier. :) So here is a picture of me with the boys tonight with my new haircut... Kevin's immediate comment was, "It's much better!" :)
Kien had 4 shots this morning at the pediatrician, so that's why he does not look like a happy camper!! :( And we're posing by some flowers and fruit that arrived today for me from Steve's work!! :)Speaking of Steve's work, he started back last week after taking off 5 weeks to be with me and help me. He is wonderful!! :) Anyway, with my 3 days of appointments last week, he was in and out of work. But this week, he has been much more back to work again. And we have a great temporary nanny to help with the boys, as my mom is leaving tomorrow. My mom has been here for 2 months!! She is wonderful too!!! :)
As for my improvements... Sunday marked one month since my surgery to remove my kidney. When I look back at the blog posts from exactly one month ago, I'm amazed at how far I've come!! Wow!!! My mom says she sees me getting better daily now. I'm going up and down the stairs with no assistance these days (it's still somewhat of a strain for me to go up and down -- but not much of a deal at all compared with a couple weeks ago!!). And I'm spending most of the time downstairs now. The chairs in the family room don't hurt anymore! I've even been caught getting down on the floor to play with Kien!!!! :) :)
I definitely needed help getting back up again though! Then over the past week, I've been daring more and more to get things from off the floor -- as long as there is a piece of furniture nearby to use to pull myself back up. Yesterday I did have some difficulty, but I made it back up on my 3rd attempt. ;)The past few days, I keep getting tempted to pick up Kien, but I'm not allowed to do that yet. But the mere fact that I'm tempted to do it shows me that I'm improving! Just a week or 2 ago, the thought would not have entered my mind!! Now I have to really remind myself that I'm not allowed to pick him up. That's a big bummer. :( I hope I can do it again soon... But I am now his primary bottle feeder again!! :) And I've taken over a good part of his high chair feeding in the past few days too!
Another improvement is that in the first couple weeks after surgery, I was having a lot of panic attacks -- and one of the causes was a lot of noise. So I couldn't stay downstairs very long due to the noise made by the boys. But now it doesn't bother me at all!! :) I don't experience any anxiety from the noise level downstairs. (I switched to a new anxiety medication, which probably is helping.)
Another area that would cause anxiety was the car. And finally last week, this started to improve too!! Our drive to Duke on Friday was the first time that I have been able to chat in the car on the way there. I have often needed to ask Steve to even stop the car somewhere along the way so I could get some air. I was not doing well with the long car ride!! (40 minutes) But I seem to be pretty much over that problem now too. Hooray!! :) I'm still not driving anywhere myself though, mainly due to my broken arm.
Last Friday in the car on the way to Duke, I commented that I was feeling so much better overall emotionally than the week before. The previous week, I was feeling pretty depressed. So I said that I must be doing better due to all the appointments I was having last week -- and I had specific things to focus on. This all boiled down to me saying that I guess it was better for me to have minor surgery that week than to lie around in bed like the week before!! ;) HA!
I'm now officially back to sitting at the kitchen table to eat with the family. :) I just sit on a pillow, but that is now adequate to keep me out of pain. Hooray!! My pain is very rare these days. Yay!! The most pain I have is in my left arm from time to time (and sometimes in the night when I end up leaning on my left arm). My walking has improved too. Last Monday at Duke, we didn't even get a wheel chair!! :) We did need it for the longer walks at Duke later in the week, but my walking has gotten much better! Yesterday I even walked around Target with my mom and then part of a mall in the evening with Steve!! That was pretty major!!! :) And I wasn't even in pain from the walking or the standing around that we did. Praise God!!!! I'm getting better!!!! :) :)
And as for the yucky stuff, everyone says my incision looks great. And yes, I do even look at it myself a bit now too. ;) Steve has started putting cream on it for me, and it has been grossing me out to feel how long it is. yuck!! So I now pretend that he's putting suntan lotion on me instead. ;) ha!
The port-a-cath incisions have really improved too since last week. It's really not sore anymore, and I'm told that it "looks great." But a nurse told us last Friday that apparently I'm allergic to the tape they were using to bandage it. Oops. The port is under my skin, but I have now seen and felt the bump where it's located -- and I've lived to tell the tale. ;) ha! I didn't even faint. (But Kien's head tends to lean against it when he's on my lap!) Apparently it really is a good thing that I got it, because a nurse told me Friday that the computer system says for me, "very poor venal access." yikes! Well, no worries anymore! :)
So overall, I'm doing great and really improving!! Thanks so much for all the prayers!!! :)
Friday, I go back to Duke for my next blood test, and we're praying that my hemoglobin will finally be at the right level. :) I will also have a couple more tests that day, but it should be a shorter day than last Friday. Thanks for the prayers!!! :)
Sunday, October 19, 2008
Please Pray for Hemoglobin Increase
My hemoglobin results on Friday were 8.6. I need to reach 9.0 in order to qualify for the clinical trial. They told me that they know I'm healthy enough for the trial (I think they were saying particularly because I'm so young), but this is just a rule that has to be followed. So we just have to hit that milestone, and then we can begin!
Tomorrow was the first day that I would have been allowed to start the trial anyway, because it had to be a certain amount of time post surgery. But I haven't hit the 9.0 yet, so now we are being delayed solely due to the hemoglobin. I will be tested again on Friday, so hopefully I will only be delayed by a week -- and we will hopefully not be stuck with the difficult decision of whether to keep waiting to begin the clinical trial or to instead go with a different treatment plan which we could begin right away. It does seem optimistic that I will hit 9.0 soon. But please pray that it happens on Friday this week!!!!
This past Monday, I was at 8.4. So I went from 8.4 to 8.6 from Monday to Friday. The previous Monday, I was at 8.1. So I'm increasing at a steady rate. My next test will be Friday. So if I stay at the same rate, I'd be about 8.9. But please pray that I hit 9.0 instead!!!!! :)
On the day when I measured 8.1, I had the shot to boost my hemoglobin. But the doctor said it would take a week until the effects started to kick in. So hopefully my rate will now be increasing... And I'm still taking those iron pills!
If I hit 9.0 next week (Friday the 24th), we'll be ready to start the clinical trial and start beating off this cancer!!!! PLEASE PRAY!!!!! Thank you!!!! :) :)
Tomorrow was the first day that I would have been allowed to start the trial anyway, because it had to be a certain amount of time post surgery. But I haven't hit the 9.0 yet, so now we are being delayed solely due to the hemoglobin. I will be tested again on Friday, so hopefully I will only be delayed by a week -- and we will hopefully not be stuck with the difficult decision of whether to keep waiting to begin the clinical trial or to instead go with a different treatment plan which we could begin right away. It does seem optimistic that I will hit 9.0 soon. But please pray that it happens on Friday this week!!!!
This past Monday, I was at 8.4. So I went from 8.4 to 8.6 from Monday to Friday. The previous Monday, I was at 8.1. So I'm increasing at a steady rate. My next test will be Friday. So if I stay at the same rate, I'd be about 8.9. But please pray that I hit 9.0 instead!!!!! :)
On the day when I measured 8.1, I had the shot to boost my hemoglobin. But the doctor said it would take a week until the effects started to kick in. So hopefully my rate will now be increasing... And I'm still taking those iron pills!
If I hit 9.0 next week (Friday the 24th), we'll be ready to start the clinical trial and start beating off this cancer!!!! PLEASE PRAY!!!!! Thank you!!!! :) :)
Saturday, October 18, 2008
Testing Day
Here are the details of my big testing day at Duke...
It all began at 9am with a breathing test. The test lasted an hour! I was in a little room with a woman, while Steve waiting in the waiting room with his iPhone. She would tell me a sequence of breaths that I needed to do into a tube on a machine...and then when it was time to do it, she would coach me and cheer me along, while we watched the results on the computer monitor in front of us. It was actually quite challenging!! I had to do all sorts of crazy deep breaths and then breathing out for much longer than I was comfortable doing, etc. Apparently some of my results were weak on this test, but that would be logical based on my low hemoglobin.
Then we moved on to an appointment with my doctor's nurse. But while we waited in a new waiting room, I was paged to the blood test area. Huh?? I explained to the nurse that we were just supposed to be meeting with Sarah, and I was not supposed to have a blood test. My biggest concern was that my port had yet to be used, and I was nervous. AND multiple friends had told me to request a prescription of numbing cream before having the port accessed. So that was one of the questions on my list for Sarah that day. I was glad I stood up for myself, as we headed back to the waiting room. But then Sarah came out to explain why I did need the blood test afterall (they hadn't tested my hemoglobin during Wednesday's blood test). But after I explained about the cream, she agreed with that route. Then Steve headed to the pharmacy with a prescription, which apparently they had to get from the pediatrics area. ;) So this took a long time. Finally....he was back, and Sarah applied the medicine. Then we had to wait one hour before the port could be accessed....but we were just a little over an hour away from our next appointment, which was way over at the hospital! So things started running behind. We had our appointment with Sarah, then I did have the blood test. The guy who did it was GREAT!! :) And I was able to lie down. There is some soreness still, so it was not pain-free. But I just lay there and occasionally peeked up at Steve's face, as I held his hand. Then the nurse left the port "accessed", so I wouldn't have anymore sticks that day!
Next....we were off to the hospital via an outdoor covered walkway. Fortunately, we had a wheel chair! It was a very long walk. I was doing VERY well with walking yesterday! But I couldn't have done all of that. And on our way over.... we ran into our friend Kathy in the walkway, who works at Duke!! :) How fun!!
When we talked to Sarah, we asked about my left shoulder and if we should pursue seeing an orthopedist at this point. She said that they have a great one there, and they should order some xrays. Soooo....my appointments were delayed even further, because we began the afternoon with xrays instead of the planned appointments. They wanted me to do all sorts of crazy things with my arm, which I definitely couldn't do! She tried moving my arm herself, and I protested! I was not going to let her hurt me, so I stood up for myself and asked if there was any other way we could do this. And there was... It was better, but still not great. So afterwards, I had a lot of arm pain due to all the manipulation. I'm anxious to hear the results of all this.
Next we got back on track (an hour late) with getting ready for my scans. They had me get into a hospital gown, which I had to wear walking down hallways and such. ugh! Fortunately, they had me wear a 2nd one backwards. ;) A nurse flushed out my port. yuck. But it wasn't a big deal, and I didn't watch a thing. Then someone took me in another room for my bone scan injection of radioactive stuff that had to sit in me for 2 hours before the bone scan. Well, she said it had to be a shot in my arm. A WHAT???? Now why did I get this crazy port if I still have to have shots in my arm???!!! I made a big deal out of this, and her responses were just weird. She was one of the only non-friendly people I dealt with all day. In fact, I mainly dealt with WONDERFUL, caring people at Duke!!! They were really great. :) Anyway... it took a long time to figure out the story, but finally I understood.... Usually, you already have an IV going for the CT scan, and the bone scan people just use the same IV for their injection. BUT I didn't have an IV, because the CT people were going to use my port. And the bone scan people can't use the port, because the radioactive stuff will stick to the plastic, and the bone scan won't turn out. ugh. So that meant I had to get a shot in my arm instead. I wasn't happy. :(
Then I was off to the CT scan. This took quite awhile, and actually, the 2 guys who did it weren't all that great either. But the nurse who came in to do the IV was awesome and really helped me. The CT guys would just leave me with my head and shoulders in the donut of the machine during breaks between scans - and I felt claustrophobic! But the nurse helped pull the table out so I didn't have to be stuck in there. whew! They also wanted both of my arms above my head, but I couldn't do my left arm - so they had me put it down by my side, and they strapped it inside something they were strapping across my mid-section. So basically, I had my left arm tied down by my side! I didn't like that too much, but fortunately, it wasn't too tight. Then the nurse did an injection through my port halfway through the scans, which made my body all warm and weird. And finally it was all done... whew! I had this done at WakeMed in early September too (although a little differently). And now I will have it done every 3 months.
THEN... it was 3pm, and we finally got a break!!! :) :) So we headed to the hospital cafeteria for lunch. At that point, I was tired and freezing and just wanted to go home. I had been doing great all day with a great attitude, but I was worn out. After lunch, I slept on Steve's shoulder in a waiting room for 30 minutes, and that helped a lot.
So at 4pm... I finally had my bone scan. The woman in charge here was a recent grad, and she was very funny. She was so sociable and just chatted away with me about things like baking cookies with a friend too late last night, etc. ;) I'm going to be doing this scan every 3 months as well. The machine started with my head, then slowly the table slid through the machine, with my head coming out first. The test took about 20 minutes. She had to tie my arms down my my sides with straps!!! ACCCKK!!! I didn't like that!! And she put a rubber band around my feet to keep them together. Amazingly, I was able to deal with all this! I know that God was with me through all these tests, and all your prayers have helped so much!!! She said that I needed to hold still and keep my eyes shut as it started on my head. She said that it would be a mistake to open my eyes, because the machine would be so close to my face that it would freak me out. So she told me that she'd tell me when my head was out of the machine and I could finally open my eyes. I did cheat though...I couldn't take it! I peeked out just a tiny bit a couple times, and it was ok. I just needed a sense of my bearings. I did alright though. :) She also played music for me, which helped. Then finally my head came out, and she said I could open my eyes. So she chatted for the rest of the test. And once my arms were out, she undid the straps. Yay!! Afterwards, she went to show the scans to someone and came back to say we needed one more. This was just of the sides and didn't take as long. Then I was done right about at 5pm!!! :)
Unfortunately, I had an echocardiogram scheduled for 4pm, but we missed that. And when someone called over for us, no one answered -- so we think they had gone home for the day at 5pm. So I guess we'll have to call on Monday to get that rescheduled. I go back next Friday to meet with the doctor, and hopefully I can just do that test on the same day.
It all began at 9am with a breathing test. The test lasted an hour! I was in a little room with a woman, while Steve waiting in the waiting room with his iPhone. She would tell me a sequence of breaths that I needed to do into a tube on a machine...and then when it was time to do it, she would coach me and cheer me along, while we watched the results on the computer monitor in front of us. It was actually quite challenging!! I had to do all sorts of crazy deep breaths and then breathing out for much longer than I was comfortable doing, etc. Apparently some of my results were weak on this test, but that would be logical based on my low hemoglobin.
Then we moved on to an appointment with my doctor's nurse. But while we waited in a new waiting room, I was paged to the blood test area. Huh?? I explained to the nurse that we were just supposed to be meeting with Sarah, and I was not supposed to have a blood test. My biggest concern was that my port had yet to be used, and I was nervous. AND multiple friends had told me to request a prescription of numbing cream before having the port accessed. So that was one of the questions on my list for Sarah that day. I was glad I stood up for myself, as we headed back to the waiting room. But then Sarah came out to explain why I did need the blood test afterall (they hadn't tested my hemoglobin during Wednesday's blood test). But after I explained about the cream, she agreed with that route. Then Steve headed to the pharmacy with a prescription, which apparently they had to get from the pediatrics area. ;) So this took a long time. Finally....he was back, and Sarah applied the medicine. Then we had to wait one hour before the port could be accessed....but we were just a little over an hour away from our next appointment, which was way over at the hospital! So things started running behind. We had our appointment with Sarah, then I did have the blood test. The guy who did it was GREAT!! :) And I was able to lie down. There is some soreness still, so it was not pain-free. But I just lay there and occasionally peeked up at Steve's face, as I held his hand. Then the nurse left the port "accessed", so I wouldn't have anymore sticks that day!
Next....we were off to the hospital via an outdoor covered walkway. Fortunately, we had a wheel chair! It was a very long walk. I was doing VERY well with walking yesterday! But I couldn't have done all of that. And on our way over.... we ran into our friend Kathy in the walkway, who works at Duke!! :) How fun!!
When we talked to Sarah, we asked about my left shoulder and if we should pursue seeing an orthopedist at this point. She said that they have a great one there, and they should order some xrays. Soooo....my appointments were delayed even further, because we began the afternoon with xrays instead of the planned appointments. They wanted me to do all sorts of crazy things with my arm, which I definitely couldn't do! She tried moving my arm herself, and I protested! I was not going to let her hurt me, so I stood up for myself and asked if there was any other way we could do this. And there was... It was better, but still not great. So afterwards, I had a lot of arm pain due to all the manipulation. I'm anxious to hear the results of all this.
Next we got back on track (an hour late) with getting ready for my scans. They had me get into a hospital gown, which I had to wear walking down hallways and such. ugh! Fortunately, they had me wear a 2nd one backwards. ;) A nurse flushed out my port. yuck. But it wasn't a big deal, and I didn't watch a thing. Then someone took me in another room for my bone scan injection of radioactive stuff that had to sit in me for 2 hours before the bone scan. Well, she said it had to be a shot in my arm. A WHAT???? Now why did I get this crazy port if I still have to have shots in my arm???!!! I made a big deal out of this, and her responses were just weird. She was one of the only non-friendly people I dealt with all day. In fact, I mainly dealt with WONDERFUL, caring people at Duke!!! They were really great. :) Anyway... it took a long time to figure out the story, but finally I understood.... Usually, you already have an IV going for the CT scan, and the bone scan people just use the same IV for their injection. BUT I didn't have an IV, because the CT people were going to use my port. And the bone scan people can't use the port, because the radioactive stuff will stick to the plastic, and the bone scan won't turn out. ugh. So that meant I had to get a shot in my arm instead. I wasn't happy. :(
Then I was off to the CT scan. This took quite awhile, and actually, the 2 guys who did it weren't all that great either. But the nurse who came in to do the IV was awesome and really helped me. The CT guys would just leave me with my head and shoulders in the donut of the machine during breaks between scans - and I felt claustrophobic! But the nurse helped pull the table out so I didn't have to be stuck in there. whew! They also wanted both of my arms above my head, but I couldn't do my left arm - so they had me put it down by my side, and they strapped it inside something they were strapping across my mid-section. So basically, I had my left arm tied down by my side! I didn't like that too much, but fortunately, it wasn't too tight. Then the nurse did an injection through my port halfway through the scans, which made my body all warm and weird. And finally it was all done... whew! I had this done at WakeMed in early September too (although a little differently). And now I will have it done every 3 months.
THEN... it was 3pm, and we finally got a break!!! :) :) So we headed to the hospital cafeteria for lunch. At that point, I was tired and freezing and just wanted to go home. I had been doing great all day with a great attitude, but I was worn out. After lunch, I slept on Steve's shoulder in a waiting room for 30 minutes, and that helped a lot.
So at 4pm... I finally had my bone scan. The woman in charge here was a recent grad, and she was very funny. She was so sociable and just chatted away with me about things like baking cookies with a friend too late last night, etc. ;) I'm going to be doing this scan every 3 months as well. The machine started with my head, then slowly the table slid through the machine, with my head coming out first. The test took about 20 minutes. She had to tie my arms down my my sides with straps!!! ACCCKK!!! I didn't like that!! And she put a rubber band around my feet to keep them together. Amazingly, I was able to deal with all this! I know that God was with me through all these tests, and all your prayers have helped so much!!! She said that I needed to hold still and keep my eyes shut as it started on my head. She said that it would be a mistake to open my eyes, because the machine would be so close to my face that it would freak me out. So she told me that she'd tell me when my head was out of the machine and I could finally open my eyes. I did cheat though...I couldn't take it! I peeked out just a tiny bit a couple times, and it was ok. I just needed a sense of my bearings. I did alright though. :) She also played music for me, which helped. Then finally my head came out, and she said I could open my eyes. So she chatted for the rest of the test. And once my arms were out, she undid the straps. Yay!! Afterwards, she went to show the scans to someone and came back to say we needed one more. This was just of the sides and didn't take as long. Then I was done right about at 5pm!!! :)
Unfortunately, I had an echocardiogram scheduled for 4pm, but we missed that. And when someone called over for us, no one answered -- so we think they had gone home for the day at 5pm. So I guess we'll have to call on Monday to get that rescheduled. I go back next Friday to meet with the doctor, and hopefully I can just do that test on the same day.
Crazy Day
Steve and I both finally got a GREAT sleep last night!!! We both slept for about 11 hours!! And I hardly ever woke up at all!!! Praise God!!!! Sleep is finally returning to our house. :)
Now the bad news... Steve was feeling sick when he went to bed last night and thought it was a sinus infection. But this morning made it clear that it's a stomach bug like Kien had earlier this week!!!! YIKES!!!!! So I slept alongside him all last night while he was sick!!!! Fortunately, I'm sleeping on a raised wedge pillow that we got at a medical supply store right after my surgery, so my face wasn't TOO close to his. My mom has now disinfected our room and bathroom, and she set Steve up in the guest room (her room). THEN... all week long, Kevin has been getting mosquito bites on his legs at night!! After one final night of this craziness, my mom set out to Ace Hardware with the boys this morning to buy something to kill this crazy mosquito. Well, the people at the store said that it looks like bed bugs!! I guess there really is such a thing as bed bugs!!! They said they likely came as larvae in his mattress (which was purchased this past spring). ICK!!!! So now we set up a bed on the floor downstairs for Kevin, and Steve and my mom are going to bomb Kevin's room with some bug killing stuff this afternoon - and Kevin can't sleep there for 24 hours. So both Kevin and my mom have been kicked out of their rooms!! ;) And Steve is in the guest room. And I'm in our room alone. What a mess!! We have bribed Kevin with ice cream this evening if he's a good boy and actually naps downstairs this afternoon. We shall see... ;)
Please pray that no one else catches this stomach bug -- especially me!!!! I'm probably the most susceptible!!! I need to get well - not sick!
I am very thankful for a few things though! Praise God that my mom is still here!!! She had a plane ticket to leave today. But mid-week, my parents decided that she should stay one more week before leaving. Praise God for that!!!! :) We REALLY need her today!! And Praise God that Steve didn't get this stomach bug yesterday!!!! I had such a big day of testing at the hospital and needed him so much yesterday throughout the day. Thank you, God, that Steve was not sick yesterday!!!!
Now the bad news... Steve was feeling sick when he went to bed last night and thought it was a sinus infection. But this morning made it clear that it's a stomach bug like Kien had earlier this week!!!! YIKES!!!!! So I slept alongside him all last night while he was sick!!!! Fortunately, I'm sleeping on a raised wedge pillow that we got at a medical supply store right after my surgery, so my face wasn't TOO close to his. My mom has now disinfected our room and bathroom, and she set Steve up in the guest room (her room). THEN... all week long, Kevin has been getting mosquito bites on his legs at night!! After one final night of this craziness, my mom set out to Ace Hardware with the boys this morning to buy something to kill this crazy mosquito. Well, the people at the store said that it looks like bed bugs!! I guess there really is such a thing as bed bugs!!! They said they likely came as larvae in his mattress (which was purchased this past spring). ICK!!!! So now we set up a bed on the floor downstairs for Kevin, and Steve and my mom are going to bomb Kevin's room with some bug killing stuff this afternoon - and Kevin can't sleep there for 24 hours. So both Kevin and my mom have been kicked out of their rooms!! ;) And Steve is in the guest room. And I'm in our room alone. What a mess!! We have bribed Kevin with ice cream this evening if he's a good boy and actually naps downstairs this afternoon. We shall see... ;)
Please pray that no one else catches this stomach bug -- especially me!!!! I'm probably the most susceptible!!! I need to get well - not sick!
I am very thankful for a few things though! Praise God that my mom is still here!!! She had a plane ticket to leave today. But mid-week, my parents decided that she should stay one more week before leaving. Praise God for that!!!! :) We REALLY need her today!! And Praise God that Steve didn't get this stomach bug yesterday!!!! I had such a big day of testing at the hospital and needed him so much yesterday throughout the day. Thank you, God, that Steve was not sick yesterday!!!!
Friday, October 17, 2008
I Did It!! Again!! :)
I survived my tests today! They lasted literally from 9am until 5pm! It was a very looong day. I am now totally exhausted and am going to bed. More later... :)
Thank you so much for the prayers!!! :)
Thank you so much for the prayers!!! :)
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