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.

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!!!!

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!!! :)

Tomorrow at Duke

We're off to Duke again tomorrow! It will be our 3rd day this week and the longest of all 3 days. It will be a day full of tests. Most of the tests are needed if I am to begin the clinical trial soon. Hopefully that will really be happening!!! (If my hemoglobin comes up high enough.) But even if not, it sounds like they would still like to have these tests done before starting my treatment.

So my first test on Friday is at 9am. And my last test is at 4pm. I will be doing some tests that I have never done before, and we'll be repeating a CT scan and a bone scan (which I did in early September). Neither of those was TOO bad the first time around...except that I had to lie still for a very long time for the bone scan. Fortunately, I do NOT need to do another MRI!!! Hoooray!!!! :) Thank you, God!!!!

So hopefully Friday won't be too difficult, despite the length of the day. But I don't fully know what to expect. And I do have to have an IV for the bone scan. That will be the first time my port is used. I hope it's not too sore...

Please pray that this all goes well -- and that my hemoglobin levels come up to the needed level!!! THANK YOU!!!! :)

Oh! It will also be the first day that our friend is coming to nanny for the boys. :) My mom will still be here to show her the ropes, but unfortunately I won't be around all day. My mom was originally going to fly home on Saturday (after being here for 1.5 months), but my parents decided yesterday that she should stay a bit longer!!! :) Hooooray!!!! So I guess she'll be here for another week? Amazingly, I'm not even attempting to plan too far in advance right now - so I'm not even sure what the plan is. Things have been pretty crazy for several weeks, so I'm just taking things one week (or one day) at a time.

Oh! And by the way... Kien is all better now, and fortunately no one else has gotten sick. :)

The B Test and The Procedure

Everything went well yesterday! I did take one anti-anxiety pill in the morning -- and between that and the prayers, I did really well! I felt like I should have been far more scared about my b- test than I was (after my really bad experience on Monday). But when Steve signed me in at the lab, he told them I had a bad experience on Monday -- and he asked them to let me lie on a bed and asked for the best person possible. And they delivered!! :) The nurse was great! Steve (who was watching -- and is quite experienced at giving blood) was very impressed with her. And it didn't hurt at all!! Woo hoo!! :) (So why am I doing this port thing??? ;) ) And I added one item to my usual list.... after asking her to not tell me anything and to not say the b-- word, I asked her to NOT do it in my hand!!! OUCH!! Steve has said many times that he wishes he could do this for me. He continues to be my hero through all of this!! (My parents and brother have also said that they wish they could do this for me too.)

Then Steve had to wheel me in a wheel chair over to another building...to the actual hospital, rather than the clinic. A nurse talked through the procedure with us, and we realized that they were planning to give me the same pain meds that I had been given as a patch in the hospital a few days after surgery which had so many bad side effects for me! So fortunately, we got that changed at the last minute!! When it was time, I actually walked into an operating room. (What? Me walk into an operating room? For a voluntary procedure???) It took awhile to get started, because they were waiting for someone to get the new pain meds for me. So I was in there conscious for quite awhile. Then they gave me an IV and I had been talking to them about some concerns... and that's the last thing I remember!!! I don't even remember the IV being a very big deal - and this time, Steve wasn't there to hold my hand! I was just sedated and not given general anesthesia. But I was told I'd be pretty out of it and that it would even cause amnesia. So I wonder if I was truly awake??? I remember NOTHING!!! Soooo great!!!!! :) :) :)

I "woke up" when they were finishing, then they transferred me onto a different bed and wheeled me down the hall. I wasn't fully aware yet...but then I remember being told I was in the recovery room, and then Steve was there too. :) We were there with a nurse for quite awhile, and I was dozing off and on. So now I have some sort of port thing under my skin (a "port-a-cath"). Ick!!! Steve got lessons on changing my bandages, as he's going to have to do it daily for 10 days. yuck! I'm pretty sore in that area now. They gave us discharge instructions, although I was too out of it to fully absorb them myself. Steve told me part of it later, and I realized that I had heard what she said while dozing....and I'm sure I would have thought I was dreaming. She said I shouldn't use email for 24 hours!! HA! She listed off things that I shouldn't do for 24 hours, such as making big decisions, using the home shopping network, email, etc. ha! Driving and herbal tea were both on the list of things to avoid as well.

We got home mid-afternoon. I hadn't been allowed to eat after midnight. But in recovery, I had ginger ale and graham crackers. Then on the way home, I was thirsty...so we got a Dairy Queen Blizzard, which I ate for the rest of the drive. We also ordered a hamburger, but I wasn't hungry for it after the Blizzard. So yes, I ate a cookie dough Blizzard for my combined breakfast / lunch yesterday. Oh well... I deserved it! ;) I was doing well enough by evening that we went to our small group at church (I was feeling well generally, although I was pretty sore -- it would even hurt to do minor things, such as smile).

Thanks so much for all the prayers that helped me make it through this procedure!!!! :) :) Hopefully this will make all future b-- tests and IV's much simpler. We'll find out tomorrow, as I have an IV lined up again...

I Did It!!!!!

I made it through my blood test, my IV, and the "minor surgery" of inserting the port!!! We're now home, and I'm ready to nap. More later...

Thanks sooo much for the prayers!!!!! :)

Encouragement and More About Today

Thanks so much for all the encouragement regarding tomorrow!!! I am quite nervous about it, but it makes me feel so much better to hear from so many friends in the medical field that this is truly for the best. But I'm still nervous.... ugh!!

Kien was sick all day, so I stayed upstairs as much as possible to avoid his germs. I felt so badly hearing him cry and not being able to help! I can't pick him up yet anyway. But this would be very bad timing for me to get sick, and I might be more likely to get sick since I'm still recovering from surgery and recovering from radiation. I do have an appointment for a flu shot next week though.

One fun thing... The medication which I will hopefully be taking as part of the clinical trial may cause sores and pain on my hands and feet. (That's not the fun part.) So they recommended that I get a pedicure before beginning the medication. So I followed the doctor's orders today! ;) And the timing was great, because my friend Jenny had given me a spa gift certificate for my birthday! So I had a nice, fancy, 1-hour pedicure this morning. Steve had to drop me off at the spa and pick me up. I'm not driving at this point, both due to all my medication and due to my arm not working. We realized as we were going out the door that my mom had taken the only car that has 2 car seats (the mini-van) -- and we were left with the SUV with only a seat for Kevin!!! But we had Kien, while my mom was on a preschool field trip with Kevin!!!! UGH!!!! Fortunately, we did have an extra car seat in the house, and Steve learned how to install it at lightning fast speeds...within an hour after Kien got sick! It was a crazy morning...but the pedicure was nice! :)

I also slept MUCH better last night!! I took the anti-anxiety medication again, and that may be why my sleep was improved. I'm also doing much better at getting myself up out of bed without Steve's help, so I don't always have to wake him up if I need to get up in the middle of the night.

On another note... my brother had surgery today! He had knee surgery. It went well, but he found out that he'll need a knee replacement in a few years. Not good. :( My sister-in-law (his wife) just had hip surgery 6 months ago. Kevin also had eye surgery in January! What a crazy year!!!

Thanks for the prayers for tomorrow!!!!

Port Tomorrow!!!

We had to get a bunch of stuff set up at Duke - the first of which was the port insertion. And it turns out that it will now be happening TOMORROW (Wednesday)!!! AAAACCCKKK!!!

I have to be there at 8:30am for an initial blood test. Ugh!! Please pray this one goes smoothly!!

Then at 9:30am, I will be at the hospital for the port insertion. I will be sedated, but not entirely knocked out. UGH!!! They said on the phone that it will take 1.5 hours!!! WHAT??? And then because of the sedation, I have to stay at the hospital for 3 hours for recovery. I also can't eat after midnight tonight.

I'm quite freaked out about this whole thing. Please pray for strength and peace - and that it goes well!!!! THANK YOU!!!!!

Uh oh!

Kien has a stomach bug!! Please pray that I don't get it from him!!!!

Back to Duke and Prayer Requests

We had another appointment at Duke today. It was to begin again with a "b...." test at 1:30pm, then my appt was at 2:30pm. We also signed the papers to agree to the clinical trial today.

The test last week went sooo smoothly! But today was a NIGHTMARE!!!!! I have been aware a couple of times over the past month that a nurse has had trouble finding a you-know-what (sorry, but I just can't "say" these words). One time was actually during surgery. After surgery, my right arm was a huge bruised MESS for a couple weeks!! It was really terrible. So anyway, today was terrible. Steve said the nurse did not do a good job. And she had to do it in my hand!!! EEEEEK!!!! I eventually had to ask to be taken to a bed to lie down for the remainder of the torture session. Ugh! And my hand actually hurt for a good hour after it was all done. Ok, change of subject...

So anyway, as a result... the current plan is now for me to have an IV port put under my skin, above my chest. AAAACCCKKKK!!!! Supposedly this will be done at Duke on Thursday. We will find out more about scheduling tomorrow. They will give me a sedative that will just make me really out of it, but it will not be general anesthesia. Oh my goodness.... I'm really going to need prayers for this!!!!!!

Anyway.... The doctor didn't expect my hemoglobin level to be fully to where it needs to be by today, and it wasn't. It was up a little bit though. But only about 30% of the amount that it needs to climb before I can begin the clinical trial. He said that the treatment I received last week usually wouldn't take effect for a week anyway, so hopefully it will take effect this week. After the IV port, I will have more testing done on Thursday and Friday this week (blood tests, CT scan, bone scan, etc.).

Soooo.... please pray for my hemoglobin level to miraculously rise by Thursday!!!! And please pray for the procedure on Thursday. I am sooooo not looking forward to this.....

Blog Comments

Thanks so much for all the blog comments! :) Several of you have now mentioned that you didn't know how to post comments though. I'm guessing that the trouble is happening at the point of signing in after writing your comment... If you don't sign in with one of the listed services, such as Google, you can just post an anonymous comment or select "name/url" and enter your name. If you choose anonymous though, please be sure to tell me your name within the comments box! :)

More Active Weekend

After feeling much better this past week, I had a much more active weekend. I spent a lot more time downstairs, and I even went out a few times!

Kien has recently decided that he LOVES trucks!! He kept giving me this truck book and saying "up" - wanting to get up on my lap for me to read it to him. :) I could slightly help him get up, although I couldn't pick him up myself. That was very sweet and fun!!

My dad was back in town, and we all went out to eat for Saturday brunch. That was my first time eating in a restaurant in over a month. And it went well! :) I brought my pillow to sit on, and I did fine. :) I did feel like I needed to stand after awhile, but that was ok too.

Then on Saturday night, we had our first meal as the 4 of us since August! My parents had a date night at Ruth's Chris, so the 4 of us ate McDonald's at home. :) Then on Sunday night, we switched. Steve and I had a date night at Ruth's Chris, courtesy of my dad!! And my parents took the boys to McDonald's. ha! So that was my first dinner out since August. Again, it went well! And yes, I did carry my pillow into Ruth's Chris. My dad had told the maitre d' about me the night before, so they gave us free dessert. :)

On Sunday, we were back at church again for the first time in a few weeks! Again, I brought my pillow, and it went pretty well.

Then later in the day, we went to pick out some pumpkins from a nearby "pumpkin patch." I squatted down to get some cute pictures, forgetting that I shouldn't be doing that - and then I had to call my dad over to get me up off the ground. ;)

I was in more pain over the weekend though and particularly didn't sleep well Sunday night. I did get hurt 3 times on Saturday from increased activity, so I'm guessing that I was in more pain due to the increased activity and from hurting myself (such as from Kevin banging a door into me! he felt soooo bad!!!).