Medication and Pain Status

Everything is going well thus far with taking the medications from the clinical trial. The biggest deal has been having to take an additional 4 pills per day now. ;)

Unfortunately, I'm still having pain. It started before I began the clinical trial though. I've always been fairly stiff when I get up in the morning (ever since surgery, I suppose). But lately, I'm in a lot of pain for the first hour of the morning. It can get pretty bad, and I basically can't do much until it starts to subside. And then it tends to happen in the evening and sometimes in the afternoon as well. I do have "breakthrough" pain medication that I can take for the pain, but this has been no fun. And the location varies. I have pain in my lower back, down my legs, and in my left arm. I've also been having trouble standing still again lately. I get pain in my left leg from standing still (that had gotten better at one point and is back now).

I don't have any doctor's appointments this week! :) But next Monday will be a full day at Duke.

So for now, my health-related prayer requests are:

• for my pain to go away
• for the clinical trial to go smoothly -- and to be successful in fighting the cancer!! :)
• no side effects from the medication as time goes on (it's more likely to happen after a little time as passed)
  
• continued improvement in my left arm's mobility
  

Arm Improvement!!

On Friday, I realized that I was able to slightly elevate my left arm for the first time since September!!!! WOW!!!! :) :) Prior to Friday, I could not lift my elbow out from my side.

What a Switch!

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!! :)

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!!)

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:

• 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!!!!!!!
  

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!! :)

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!!! :)