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!!! :)

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!!! :)

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!

Friday at Duke -- including a cute Kevin story :)

I told multiple people this past weekend that I finally have a week with NO appointments this week... and then I realized today that I was wrong. Bummer! But we don't have anymore appointments at Duke this week (which always end up lasting a full day). Instead, we have our first follow-up radiation appointment. It has been 4 weeks since the end of radiation, so we have an appointment there this week. Our next appointment at Duke is next Monday. And if we are able to begin the clinical trial that day, I think I'll be going back the very next day and probably quite frequently in the beginning. They will want to be monitoring me a lot (but the treatment is just done by pills -- hooray!! :) ).

I never told much about my appointments on Friday. We were at Duke all day long, as usual. We got there at 9am and had my blood test (using my wonderful new port). We remembered to use the prescription numbing cream at home before we left (an hour in advance)... and as a result, I did not feel a thing!!!! Not at all!!! It was great!!! :) They had me lie down again on a nice bed... and I felt nothing! Hooray! :) And of course, there is no issue now with finding a vein. That is all over, due to the port. :)

So then we found out a bit later that my hemoglobin had only gone from 8.6 to 8.7 -- and still wasn't at 9.0 yet. I got pretty emotional when we talked to our nurse. But she is very sweet and positive. So although I shed some tears, I was ok in the end. And she convinced me that it's no big deal to wait another week. I'm only just now at the point when they could be starting the trial anyway, due to having to wait for my surgery recovery. And she said that they want me to be as strong and healthy as possible when I begin, so that I have the best chance of dealing well with the new medications. They also did the CT scans and bone scan the week before, so they had those results -- and she assured me that there wasn't much difference from early September. Nothing is changing quickly. She did talk to me about some details of where there are spots of cancer, and she mentioned 2 places that I wasn't aware of, so that was a little upsetting. But she wasn't concerned -- and maybe it was already there before? (Somehow I didn't get the chance to ask.) She mentioned the top of my left leg and somewhere on a rib. If they're not concerned, then I'm not going to be. It certainly doesn't help me to dwell on it or get upset. So now I move on and forget it...

I had an EKG in the morning, which was very quick and easy. The hard part was that it was on the complete opposite side of the building, and we didn't get a wheel chair. I was walking great that morning!! :) So we decided I should walk. I was very slow, but I was doing well. But that was pushing it to walk that far and then to have to go all the way back.

We talked about my broken arm, because an orthopedist had viewed my xrays. He said he wanted to keep tabs on me. Basically, it's fractured, but not all the way through. And it's a messy break. So he says that it is not likely to heal well. It isn't a smooth surface, due to the cancer (although it has now been radiated). And he said he doesn't expect me to regain full mobility. However, these statements are vague -- and it certainly doesn't mean that I won't heal at all or that I won't regain any mobility. And these are just the scientific answers -- not God's answers. So we still wait in hope that things will improve. I do believe that my arm has continued to improve some recently. I don't even wear a sling anymore, but I have worn it to church sometimes, simply as a warning to people to please not hurt that arm. ;) The nurse mentioned that we might want to start some physical therapy sometime soon. So I plan to bring this topic up again with them soon -- and maybe see if we can see this orthopedist ourselves.

So in order to raise my hemoglobin, they gave me another shot on Friday. The nurse is not concerned about me eating iron foods, because I am taking the iron pills and they have given me the shot. She said it would be fine if I wanted to...but she said that if I don't like chicken livers, don't eat them just for the iron. ;) ha. She obviously was not concerned about me eating iron at all. I guess she didn't see that as being a big factor in the raising of my iron at this point, on top of the pills and the shot. I'm sure it wouldn't hurt...but I'm going to take her advice about not eating chicken livers. ha!

Then we had an appointment at 1:15pm for an echocardiogram. Someone told us it was back where I had the EKG. After walking all around, I was worn out and my lower back was hurting. So as we passed the front entrance, I had Steve get me a wheel chair. But I had done a great job of walking that morning! So we went back for the echocardiogram...and while we waited, they told us that we were in the wrong place!!! Apparently we were supposed to be in an entirely different building, which was 15 minutes away!!! OH NO!!! And this was the same test that we had missed the week prior! They did do echocardiograms right there, but they were all booked up and couldn't take me. So someone was able to reschedule my appointment at the other location....and off we went. We drove over there, waited a long time, and I had my test.

Now here is the really funny part... after the nurse brought us back into the room, she said that we looked very familiar. Well, we live about 40 minutes away, and we are never in that area. So I figured she was mistaken. But then she said, "And I think I know how I know you. Do you have a son named Kevin?" WHAT???!!!! HA!! :) So she explained.... for some reason, she was working at our local hospital (not affiliated with Duke at all) back in September, and she was a nurse tech who came into my hospital room to do something during my week after surgery. And when she came in, my mom was there with both boys. And Kevin said to her, "Hi! I'm Kevin. Who are you?" ha! He made such an impression on her that she remembered him, remembered his name, and remembered us. ha! :) She said she even gave him crackers and peanut butter while she was there. That was sooo funny!!! Kevin can definitely make his impression on people! ;)

Anyway, they wanted me to lie on my left side on a bed for the echocardiogram...but that's my broken arm, and my back was hurting from all the walking. So fortunately, they decided to try doing it while I was on my back instead. And it was good enough! :) Steve enjoyed watching the screen where pictures were being displayed of different angles of my heart, while I simply tried to endure this. I didn't look, of course. And of course, it wasn't really uncomfortable... It simply gave me the eebie-jeebies that they were all watching my heart. ;) ha.

So when we got there, I realized that my port had never been de-accessed at the other building! And we asked if someone there could do it. But nope... No one there was trained to deal with ports. So yes, we had to drive all the way back to have it de-accessed. Another 15-minute drive. And once we got there, I realized that it would be crazy to waste another $10 on valet parking (including tip). So I suggested that perhaps I could go in by myself. It was almost 5pm, so I had called ahead to make sure there was someone in the lab to do this for me. There wasn't!!! But they found someone in Clinic 1A who could do it. I was quite sure that Clinic 1A was the one directly across from the lobby. Makes sense, right? Well, I got inside to discover that that was 1C. And 1A was all the way down the hall, around the corner, down another hall, through a waiting room, and down another hall... back to where we had been in the morning!!! Wow! That was a VERY long walk!! But I went ahead and did it all by myself!!! I walked past an older man sitting in a long hallway alone, and he said, "You're walking awfully slow." I just said, "Yup." After I passed, I realized I should have said, "But at least I'm walking!!" Oh well. ;) Anyway, I handled the port de-accessing by myself, without Steve holding my hand. :)

Then the next morning, I went to my regular doctor's office for a flu shot -- and I even walked inside all by myself, while Steve and the kids waited in the car! Yes, I went and had a shot all by myself!!! (This is pretty major for me! I'm getting brave!!)

I was pretty tired and sore on Saturday from all the walking on Friday. But on Sunday morning, I was walking GREAT!! I wasn't walking at a super slow snail's pace anymore!! It's the best I have walked in 2 months!!!! :) And after church, we stood around talking for a long time. And I was able to stand for all that time without being in pain!!!! Hooray!!!! Praise God!!!! I'm still getting better!!!! :) :) I still get quite stiff in the morning or after taking a nap. I took a long nap this afternoon and had trouble moving for the first hour afterwards. But overall, I'm improving a lot!! Hooray!! :) It's hard to tell if my walking difficulties come from my lower back (where there are tumors and pinched nerves and a fractured bone) or if they are coming from surgery recovery on the front. But most likely, it's a combination of the two. And now that it's improving, we're wondering if the radiation is really kicking in and helping my lower back! I hope that's the case!!! :)

I'm also back to doing a lot of things for the kids again! I just can't pick up Kien. So we had a babysitter come for a couple hours Saturday evening, so that Steve could go out. The babysitter stayed with me, just to help with the lifting (high chair and bedtime). And we still have our friend with us this week as a nanny for one final week. My mom went to a writer's convention for the weekend, came back here for half the day yesterday, then flew home today. She might be flying back this coming weekend, but we have yet to figure it all out.

Thanks for the prayers for recovery and raised hemoglobin!!