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!!!! :) :)
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