First Wheel Chair Ride

Here is a picture of me on my first wheel chair ride. :) ha! This was taken on my cell phone by Steve when we were being discharged from the hospital on Thursday last week. We didn't have my camera, so we used my cell phone - because, of course, I had to have a picture of my first wheel chair ride!! ;)

Well, here's where the story gets funny.... I wanted to catch up on blogging this weekend (ha! while recovering and while family was here and while we were celebrating my birthday! talk about being unrealistic and silly - hee hee!). But I was always awake in the middle of the night, so what better time to blog? So before going to bed Sat night, I asked Steve to please bring my cell phone upstairs and leave it out for me to find -- so I could emails the photos to myself and then blog them. I didn't know where my cell phone was, but Steve seemed to know. I stressed the importance of this -- because I had wanted to blog in chronological order and this was really the next story. (Steve was staying up to wrap my birthday presents after I went to bed! :) ) So when I awoke in the middle of the night with no phone to be seen, I was truly surprised. Surely he did not forget. I had really emphasized it and asked so nicely. So awhile later, when he was awake too (because I needed help doing something, I'm sure), I brought it up. Then he suddenly got very groggy and didn't know where it was....and definitely couldn't get it for me in the middle of the night so that I could blog chronologically. sigh.

Well, the next morning was my birthday. And what did Steve give me for my birthday in the morning??? An iPhone!!!!!! :) :) :) And what was so hysterical is that Steve had already set it up for me and transferred my service from my old phone on Saturday, which is why I couldn't find my phone -- and why he could NOT give me my phone so that I could retrieve my pictures, as that would give away the secret!!!! HA!!!! :) Now the only catch was that I wanted those pictures and that phone no longer has service with which to email them. HA! :) Oh well... I decided to just take a picture with my camera of the wheel chair picture being shown on the tiny screen of my now extinct little cell phone. :)

Oh! And back to the original subject... I have now also ridden in a wheel chair several more times... First for a long distance at Duke to see the oncologist. And then they have started taking me into radiation in a wheel chair, because I'm walking so slow and often looking so out of it (or probably pathetic). ;)

Slightly Better Night

Steve Here. Karin was in pain until 1 AM. Finally slept from 1-6am, walking only twice for a short time. 5 hours isn't great, but an improvement. Once we get the pain under control, looks like sleeping will improve. Other side-effects such as panic attacks are still occuring but with less strength. Trying to take a nap now..

Staples Removed!

Karin's staples - 19 of them - were removed an hour ago. It was a quick and painless process! She can now bathe normally again too (we had to keep the incision dry until now).

Sleep Struggles Continue

This is Steve. We slept a total of 5 hours last night. The longest stretch of sleep was 3 hours. The rest was short naps of 10-30 minutes. It is very very difficult for Karin to get comfortable enough to all asleep - due to aches and pains in her shoulder and legs and lower back. It typically takes 20-30 minutes of frustrating moving Karin and pillows, with a lot of help from me, for her to get comfortable. And even then her mind just can't seem to achieve sleep.. she can't keep her eyes open but with them closed she can't stop talking, often saying thinks that make no sense, basically she's instantly into a half-awake half-dream state and verbalizing her dream. Frequently when she does sleep, after 10-30 minutes her body has an involuntary twitch/jerk, which inflicts great pain to her shoulder and wakes her up crying in agony, which wakes me up. As usual I was so tired I could hardly keep my eyes open while helping her. I think my shoulders and biceps are getting stronger from helping her up and down every 5 or 10 minutes. This has been the pattern for 5 or 6 nights now. I think this is the first time I've explained it in such detail.

The doctor yesterday thought that taking the anti-anxiety meds, which also have a sedative affect, at bedtime, would help her sleep, but it did not. I'm going to call the nurse again today (as I have nearly every day) to talk about adjusting her medicine to manage pain and reduce side-effects. This time I really need to stress her desperate need for sleep!! How can she get well if she does not sleep!

Meeting Dr George

This is Steve. We had our first meeting this morning with Dr George at Duke. In addition to being a specialist in research and treatment of Kidney cancer, he really did a great job of being compassionate. We're blessed to have all of that in one doctor.

Karin only was able to sleep 3.5 hours last night, on top of not getting much sleep for several days now, and she had another panic attack on the way there (we had to pull into a parking lot so she could get out), and so she took some anti-anxiety medicine, which probably makes her even more tired. So she had a tough time keeping her eyes open while meeting with him. One great outcome of the meeting is that we're switching pain meds again (back to the oxycontin she was on before surgery, but at a higher dose), and have great hopes that the crazy side-effects we've been dealing with for 6 days will go away and she will be able to get much needed sleep! We've already started the transition and Karin was able to fall asleep quickly and is sleeping well! :-) I need to wake her up in a minute to give her pain pills. She's taking only short-acting ones every 3 hours for the rest of the day until we start the new long-acting meds tonight.

BTW, I haven't been getting nearly enough sleep for days either. I've often been up trying to help Karin get comfortable and calm to sleep. I cannot adequately describe it, but our nights lately have been very long frustrating ordeals.. but there are times Karin has woken up when I did not, especially Saturday night as I was so wiped out that I could not hardly get out of bed.

He spoke in a calming way, which was wonderful, but didn't help Karin's struggle to stay awake. I'm going to need to review the meeting with Karin when she gets some sleep and can keep focus. He talked about this cancer in general and it's appearance in our case. As we knew, this is a tough cancer to fight once it has spread, and our's appears aggressive based on the degree of spread. But treatment options are advancing rapidly in the last couple years. There is several treatments available, and it is good of course that Karin is young and has been in good health otherwise and her energy level has been good (prior to surgery).

He spoke to us about the potential of a clinical trial of a new combination of drugs that is showing better results than the drugs separately. We're going to try to get involved with that trial as the first attack on the cancer - to hit it hard right from the start. But we'll need to wait a couple weeks before any treatment (trial or not), to recover more from surgery and radiation fatigue. We're going to meet with him again next Monday to check on status and talk further.

There was more said than I can capture well - It was at least an hour with him, and that was after info was gathered by another doctor first. There was a fair amount of technical info about treatment options, all of which I've already read a lot about and will likely give more info on in the future.

Fun with Family, Birthday Celebrations, Recovering, Pain, and New Oncologist

I have sooo much to say, but unfortunately I have no time to say it (unless I can't sleep tonight and can do it in the middle of the night - ha!). I have been home for 3 days now. I am improving, but I am also still experiencing a lot of pain. So we need to have a chat with a doctor about that tomorrow, because it does get quite severe and has kept me from sleeping most of the last 2 nights. I also was unable to get much of a nap today (which I really needed).

But today was my birthday!!!! :) :) Thank you for all the wonderful birthday wishes!!!! I am now undeniably in my mid-30's. sigh. ;)

Steve and my parents held a big birthday party for me this afternoon at our church! It was FABULOUS!!!! I can't wait to write more about it and post pictures. :) But that must wait until I at least try to get some sleep...

Also, my dad returned on Friday night from Toronto - along with my Aunt Diane!! And then Saturday morning, my brother Greg and his family arrived from Texas!!!! :) :) So it was WONDERFUL seeing everyone!!! Of course, it was always tricky having to decide whether to socialize or try to sleep (which never worked well anyway). But what a fun weekened after my week spent in the hospital!!! :) :) We did stay home all weekend, with 2 exceptions.... my birthday party today and a professional family photo session yesterday (where they took good care of me by keeping me in a chair).

I will continue with radiation this week at 2pm each day. I'm not sure if my last day will be Thursday or Friday -- or if it's even going to be extended due to those new spots that were located last week. We shall see. I think I have failed to mention that radiation often takes somewhere around 6 weeks to stop the pain. Ugh. (Despite the fact that radiation will be long completed by then.) So unfortunately, we're still working on pain management -- and it hasn't gone well this weekend. I'm also having some bad side effects of anxiety attacks (I have meds for that), sleeplessness, and something that you might call hallucinations (but I'm not sure if that's truly the right term -- I'll try to explain more in a later message).

Fortunately, I stayed pretty pain-free for my birthday party!! :) (But I really suffered for it afterwards. :( ) It was still a wonderful afternoon regardless!!!!! :)

On Tuesday, I will have my staples removed. Oooo. Let's not even talk about that one.

But tomorrow morning (Monday), I have an important appointment with a new oncologist!! He is an expert in kidney cancer treatment and research. Bear in mind that kidney cancer is not even very common, so it is awesome that this man is even in our local area! We were referred to him through multiple channels, including through doctors in both NY and Charlotte, NC.

I don't know what to expect yet out of this first appointment, and I am nervous. Steve is my research guy, so he is much more prepared than I. This time, both of my parents want to attend the appointment. Fortunately, they can, because my Aunt Diane is going to stay home with the boys. :) (She and my dad leave later on Monday.) Please pray for a good appointment and wisdom for all involved!!! Thank you!!!!

I have so much more I want to say once I get my life little more in order. For example, from where I'm sitting in our bedroom right now, I can see 9 birthday presents that I have not opened. What????!!!! That's insane!!!! That just shows how nutty today has been. ;) OH! And then we realized just a bit ago that Steve even had more birthday presents to give me, and he forgot all about them! ha! Busy day. ;)

The Chaos of Coming Home from the Hospital

A few more stories from Thursday...

Steve had asked our friend Bill to get the Odyssey keys (and the Odyssey) from my mom in order to pick us up from the hospital. We figured the Odyssey had the most comfortable seats for me to sit in. However, this is our only car with TWO car seats. Kien does not have a seat in our Highlander. But that was ok, because the boys were still napping, so my mom didn't have anywhere to go. HOWEVER.... my hospital discharge took a LONG time, and Kevin had an appointment with a pediatric orthopedist at 3:30pm for his fractured arm!!!! My mom couldn't leave until she had 2 car seats in order to take both boys!

I think we got home from the hospital around 3:25pm! Kevin was already buckled into the Highlander, so he didn't get to say hi to me and was crying in the car! This wasn't my "welcome home from the hospital" that I had pictured. ;) My mom quickly passed off Kien to us, and we went inside with him. Then we realized that my mom didn't have Kevin's x-rays (they hadn't been given to her at the appt. So during their speedy drive to Kevin's appt where I hoped they wouldn't be too late and miss it... Steve had to figure out the name and number of the x-ray place that the pediatrician had sent my mom and Kevin to the day before. Steve managed to get in touch with them just in time -- and just as Kevin's name was called in the orthopedist's waiting room, the x-rays started transmitting to their office via fax.

Then we had less than an hour to get some new prescriptions from my oncologist's office before they closed for the day. I just wanted to crawl into bed upon my return from the hospital, but this wasn't one of the options. So we chose to have Steve drive to the oncologist's office alone, then fill the prescriptions (which I was going to need soon). I stayed home alone with Kien -- yes, just minutes after returning from the hospital. ;) sigh.

So then after a week of being cooped up in a hospital bed, I got to play Mommy twice in one hour! First, Steve prepped a bottle for Kien, so I held him to feed him - until he was ready to get down to play. THEN... my mom called. Apparently, Kevin was refusing to remove his shirt in order to have his cast put on. ugh! Fortunately, Mommy was still able to save the day. :) The solution involved some communication, explanation, and a bribe. ;) ha! It worked!!! :) I was very proud of myself for still being able to be a Mommy after my week in the hospital. ;)