This morning was the first time I had any type of appointment that Steve was unable to attend. He really needed to be at work today, and we decided it would be easy enough for my mom to take me. So that meant the boys came too! All I had to do today was a 15-minute IV at Duke (it was something to help my bones). All together, we were there for about an hour.
Many times in the past, Steve and I went to Duke with me riding in a wheel chair. But today, we had a fairly long walk... and instead of me riding in a wheel chair, I was pushing a stroller! :) And I was walking GREAT!! :) It felt sooo good to be walking confidently through those hallways with my boys!!! Then I set them up with snacks and a portable DVD player in the waiting room with Grandma. And when it was my turn... I had to go into the oncology treatment room alone. Steve had applied the numbing cream back at home, so I didn't feel a thing when they accessed my port. :) Hooray!! And then I sat there alone for my IV. I wasn't even nervous!!! It was pretty easy!!! :) :) When I first sat down, I commented that I had never done this without my husband holding my hand. And a woman nearby (who was sitting in a chair to accompany a friend or family member) said that she would be happy to hold my hand if I needed her to. :) But I did great!! I even fell asleep during it! ha! I was comfortably reclined in a chair with a blanket, flipping channels on the TV on the ceiling. And I did it all on my own!!!! Needless to say, I was quite proud of myself!!!! Woo hoo!! :)
Friday, November 7, 2008
Thursday, November 6, 2008
The Missing Story
I posted a story on here last night, which is pretty much unrelated to my health situation.... It's about another event in our life. But it seems safer right now to remove the post until later. So I am just writing to explain why it is no longer here, in case you saw it already. ;) It will return later when I know I can safely share my story with the world!! :) (But yes, the story is still valid!!)
Tuesday, November 4, 2008
The Cancer Fight Continues!!
My cancer fight began with radiation for 3 weeks and continued with surgery to remove my kidney on Sept. 19. Then since early October, we have been waiting for surgery recovery and then for my hemoglobin to get high enough to continue with the actual fight. And now we have made it!!! :) :)
This morning, I took my first cancer fighting pills!!!! My mom and Steve were both sitting beside me as I took them (Steve counted them out for me and gave me the dish). And before I took them, I prayed out loud for this to work and to cure me and for me to have minimal side effects.
I am now taking 2 medications. The first medication is already FDA approved. The second medication should be FDA approved very soon, but it is not yet. But the true reason that this is a "clinical trial" is because we are combining the 2 medications. There was already a first phase of this trial, which consisted of 3 people. Their doses were too high, and they had to end the trial due to too many side effects. (The side effects are not life-threatening. But they are uncomfortable things like sores on the hands and feet or sores in the mouth, heart burn, etc.) So this is now the 2nd phase of the clinical trial, and they are reducing the doses. I am the first person in the 2nd phase of the trial! You cannot participate in the trial if you have already been receiving another treatment (such as taking the single medication which is already FDA approved). So my timing is perfect....as I'm ready to begin treatment right when they're ready to begin the 2nd phase of this trial. And I am praying that this timing is a God thing!! We feel fortunate that I am able to do this. Please pray with us that the trial will be successful!!!
I have already been taking medication 3 times per day. I take a little bowl of pills first thing in the morning, then again at 3pm, and finally again at 11pm. Steve has always taken charge of my medication. He is such a big support and helper to me!! :) He even counts out my 3pm pills before he goes off to work in the morning! :) At each medication time, I take 3 different pain pills (narcotics plus ibuprofin). This used to be 5 pills until Steve requested a 1-pill prescription for ibuprofin, so I wouldn't have to take 3 Advils 3 times per day. Plus at bedtime, I take one additional pain pill for nerve pain. I also take 2 different anxiety meds at bedtime. Then I also take 1 iron pill 3 times per day. I'm also supposed to take calcium 3 times per day, but not at the same time as the iron. Then there are several other pills that I take as well, but I won't go into all the details of everything. :) Bottom line is that I have now added 4 pills (the cancer fighting ones!!) to the morning dish, as of today. So in the morning, I now take 11 pills. In the afternoon, I take 7 pills. And at bedtime, I take 8 pills. Whew!! Fortunately, most of them are small. And there are several other supplements that I should take during the course of the day.
As for the clinical trial, one of the medications I will continue to take daily. But with the 2nd medication, I will take it daily for 2 weeks, then I will go off of it for one week. Then the pattern continues. On day 14 of the trial, I will go back to Duke for a full day of blood tests, where they will check me throughout the day. Thank goodness for the port!! I will have appointments every 2 weeks in the beginning. Then it will eventually switch to every 3 weeks. And I will have my scans redone every 3 months. The trial will continue indefinitely...assuming it works well for me.
As of yet, there is no "cure" for kidney cancer. So the hope for this clinical trial is that it will stop the spread of the cancer and shrink existing tumors. Apparently the individual drugs eventually stop working and patients have to switch to a new treatment. Of course, I'm only the 4th patient to take the combination of the 2 drugs. But it is assumed that eventually, I would need to switch to a new treatment.
My pain has been continuing over the past week. The nurse practitioner said that it may be due to the shot they gave me to increase my hemoglobin -- and due to the hemoglobin increasing and my body working so hard. I had a very tough time sleeping Monday night in particular, due to the pain. I'm having nerve pain down my legs and sometimes in my lower back.
Also, we noted tonight that I had a little increased movement in my left arm! Wow!! Praise God!!! :)
My prayer requests are:
This morning, I took my first cancer fighting pills!!!! My mom and Steve were both sitting beside me as I took them (Steve counted them out for me and gave me the dish). And before I took them, I prayed out loud for this to work and to cure me and for me to have minimal side effects.
I am now taking 2 medications. The first medication is already FDA approved. The second medication should be FDA approved very soon, but it is not yet. But the true reason that this is a "clinical trial" is because we are combining the 2 medications. There was already a first phase of this trial, which consisted of 3 people. Their doses were too high, and they had to end the trial due to too many side effects. (The side effects are not life-threatening. But they are uncomfortable things like sores on the hands and feet or sores in the mouth, heart burn, etc.) So this is now the 2nd phase of the clinical trial, and they are reducing the doses. I am the first person in the 2nd phase of the trial! You cannot participate in the trial if you have already been receiving another treatment (such as taking the single medication which is already FDA approved). So my timing is perfect....as I'm ready to begin treatment right when they're ready to begin the 2nd phase of this trial. And I am praying that this timing is a God thing!! We feel fortunate that I am able to do this. Please pray with us that the trial will be successful!!!
I have already been taking medication 3 times per day. I take a little bowl of pills first thing in the morning, then again at 3pm, and finally again at 11pm. Steve has always taken charge of my medication. He is such a big support and helper to me!! :) He even counts out my 3pm pills before he goes off to work in the morning! :) At each medication time, I take 3 different pain pills (narcotics plus ibuprofin). This used to be 5 pills until Steve requested a 1-pill prescription for ibuprofin, so I wouldn't have to take 3 Advils 3 times per day. Plus at bedtime, I take one additional pain pill for nerve pain. I also take 2 different anxiety meds at bedtime. Then I also take 1 iron pill 3 times per day. I'm also supposed to take calcium 3 times per day, but not at the same time as the iron. Then there are several other pills that I take as well, but I won't go into all the details of everything. :) Bottom line is that I have now added 4 pills (the cancer fighting ones!!) to the morning dish, as of today. So in the morning, I now take 11 pills. In the afternoon, I take 7 pills. And at bedtime, I take 8 pills. Whew!! Fortunately, most of them are small. And there are several other supplements that I should take during the course of the day.
As for the clinical trial, one of the medications I will continue to take daily. But with the 2nd medication, I will take it daily for 2 weeks, then I will go off of it for one week. Then the pattern continues. On day 14 of the trial, I will go back to Duke for a full day of blood tests, where they will check me throughout the day. Thank goodness for the port!! I will have appointments every 2 weeks in the beginning. Then it will eventually switch to every 3 weeks. And I will have my scans redone every 3 months. The trial will continue indefinitely...assuming it works well for me.
As of yet, there is no "cure" for kidney cancer. So the hope for this clinical trial is that it will stop the spread of the cancer and shrink existing tumors. Apparently the individual drugs eventually stop working and patients have to switch to a new treatment. Of course, I'm only the 4th patient to take the combination of the 2 drugs. But it is assumed that eventually, I would need to switch to a new treatment.
My pain has been continuing over the past week. The nurse practitioner said that it may be due to the shot they gave me to increase my hemoglobin -- and due to the hemoglobin increasing and my body working so hard. I had a very tough time sleeping Monday night in particular, due to the pain. I'm having nerve pain down my legs and sometimes in my lower back.
Also, we noted tonight that I had a little increased movement in my left arm! Wow!! Praise God!!! :)
My prayer requests are:
- Praise God for the 11.0 hemoglobin!!! and the ability to start the clinical trial!!! :)
- minimal side effects
- decreased pain
- increased movement and healing in my left arm
- that the new meds will be extremely effective and will fight off this cancer!!!!
- a complete cure!!!!!!!
Monday, November 3, 2008
Would You Believe an 11.0????!!!
Yes, my hemoglobin level was an 11.0 today!!!!!!!! PRAISE GOD!!!!!!!! It only needed to be at least a 9.0!
As a recap... 4 weeks ago, it was 8.1. That day, they gave me an injection to boost the hemoglobin level. The next Monday, it was 8.4. Then Friday of that week, it was 8.6. The following Friday (1.5 weeks ago), it had only gone up to 8.7. They also gave me an injection that day.
I don't think anyone expected it to be an 11.0 today!!! At best, we hoped for about a 9.1! We were pretty shocked to hear 11.0! I had NO idea it would be that high!!! And my reaction... was to say that God was just trying to show off!!! :)
So many people have been praying for me! It would have been easy for God to get me above a 9.0. But I believe He shot it all the way up to an 11.0 to show that HE is truly the One who did it!!!! THANK YOU, GOD!!!!!!!
And thank you to all of you for your prayers!!!!!! :) :)
So I start the trial in the morning!!!! I have the pills and will take them when I get up! I will write more later! :) For now, I have a college friend in town who was with me at Duke today and is coming over for dinner tonight. It's been a great day!! :)
As a recap... 4 weeks ago, it was 8.1. That day, they gave me an injection to boost the hemoglobin level. The next Monday, it was 8.4. Then Friday of that week, it was 8.6. The following Friday (1.5 weeks ago), it had only gone up to 8.7. They also gave me an injection that day.
I don't think anyone expected it to be an 11.0 today!!! At best, we hoped for about a 9.1! We were pretty shocked to hear 11.0! I had NO idea it would be that high!!! And my reaction... was to say that God was just trying to show off!!! :)
So many people have been praying for me! It would have been easy for God to get me above a 9.0. But I believe He shot it all the way up to an 11.0 to show that HE is truly the One who did it!!!! THANK YOU, GOD!!!!!!!
And thank you to all of you for your prayers!!!!!! :) :)
So I start the trial in the morning!!!! I have the pills and will take them when I get up! I will write more later! :) For now, I have a college friend in town who was with me at Duke today and is coming over for dinner tonight. It's been a great day!! :)
Sunday, November 2, 2008
Cute Kiddos, Pain and Monday
I got to hold my little lion for a bit on Halloween night! :)
And I wanted to show off my 3 cute boys! :)
We trick-or-treated at a few nearby houses, then we drove to some friends' houses for the rest of the evening - because I couldn't walk around our neighborhood. But already, I had walked quite a bit compared to usual!!Unfortunately, I've gone back to having pain. It's mostly been in my left leg, although I've had some periods of pain in my lower back and also in my left arm (especially in the night). So I've been taking the break-through pain meds again, which I hadn't taken for at least a couple weeks now. I'm wondering if the additional pain is coming from doing more walking than usual. The pain also starts up quickly after holding Kien (although I started experiencing the pain a couple days before I started holding Kien again).
Tomorrow is my appointment at Duke, so we're going to talk about the pain. But of course, I'm also going to have my blood test...and we're praying that my hemoglobin will be high enough to begin the clinical trial. Please join us in praying on Monday morning that my hemoglobin will be at least a 9.0!! My blood test is at 11:30am. Thanks for the prayers!!! :)
Friday, October 31, 2008
I Can Hold Kien!!!
I called my surgeon's office this morning and spoke to a nurse.... and I told her that as of today, it's been 6 weeks since my surgery to remove my kidney... and am I now allowed to hold my 17-lb son????? She went to ask another doctor, and came back to say.... YES!!!!!!! :) :) :)So I held Kien for the first time today in 6 weeks!!! :) :) However, I know that when my back got really bad at the end of August, I could not hold him. Then I went to an orthopedist and got an MRI on Sept. 5, and that's when it all began. I imagine that the pain perhaps decreased enough in early September that I did hold Kien again?? But really, it may have been almost 2 months since I had been able to hold him!!
Kevin wanted me to hold him too, but I'm definitely not ready for that. ;) It was actually holding Kevin back in April (and going out with friends one night in heels) that led to the beginning of my back pain that never went away.
Here's our family!! :)I pulled Kien up out of his high chair, which was a bit of a trick (particularly with my broken arm). And after a bit, I had to hand him back to Steve. I held him for a couple other brief times during the day today until it would start to hurt (the pain I'm feeling is in my left leg). I can't hold him for long. But it's so wonderful to hold him again!!!! :) :) And this afternoon, Kien actually pulled on my pant legs, looked up, and called out, "Mama! Mama!" So he seems to now be aware that I CAN pick him up again!!! :)
Wednesday, October 29, 2008
Handicapped Parking
We got a handicapped placard for our car today!! :) Our nanny, Anna, took us out running errands this morning (unfortunately this is her last week with us!). So we parked in our very first handicapped parking space this morning. ;) We had to get a picture of the occasion. ha! We balanced Kien next to me on the car, with my arm around him. I sooo hope I finally get to hold him soon!!!!!My handicapped placard will last for 5 years. I don't always need it, for sure -- but I'm sure it will come in handy at times!! :) My walking is actually getting better and better!! But I decided not to show off my new skills as I walked into the DMV. ha! And after I first reached for the stroller to push, I then asked Anna to push it (I don't know how well I could have handled it anyway). Better not look TOO capable as I walk in there! ha!! ;) Seriously though, I already had my nurse's signature and approval on the form, so that's all that was needed. ;) And it will be so nice to have this privilege in large parking lots!
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