09-22-11

This is my good friend, favorite chiropractor, and awesome musician,  Jeff Williams.  Thanks for all the music Jeff!  Click here to play:   04 Track 04 2

I can’t believe I am finally heading home!  Yesterday when I saw my team they told me I was ready to go and I did not disagree one bit!  I just needed to have some blood drawn and central line removed.  Jan was with me and after listening to me procrastinate about getting the line removed, persuaded me to go ahead and get it over with.  And It was not bad at all!  I posted a video when I had the PICC line removed from my arm, and decided to post this video of having my CVC removed too.  So glad (Jan was right!) to have it gone!  The sound didn’t come across too good on these videos, but chewing that gum did!

            

Last night we met my dear friend Ginny for dinner.  Ginny and I met on a Southwest flight to Houston last fall and instantly bonded.  After that flight all I knew was that she worked at a compounding pharmacy in Katy and I wanted to go see her, and she said she had been praying for me and didn’t know my name!  So the next time I was in Katy with Kelli, we drove 3 or 4 blocks down the street from her apartment to a compounding pharmacy and there was Ginny!  We couldn’t believe we got it right on the first try!  Ginny has prayed relentlessly for me!  She is beautiful inside and out and I love her!

This morning Jan and I got most of our things packed up and ready to move home.  Wade got in this evening and tomorrow we will hit the road to spend a couple of days with Mother and Daddy in Tyler, and then look out Hereford ! here we come!  I am so ready to see my family and friends!  I have been in Houston for 138 days, or 4 1/2 months.  What a journey it has been!  I am going to keep blogging when I have news, so check back every now and then!  The support, prayers, and love you have shown me has helped to carry me through and keep me going.  Here is a huge Thank You from the bottom of my heart!

09-19-11 Day +118

Today was a really good day!  I have felt better than I have in quite a while.  I really believe I’m finally getting over the BK Virus.  Yippee!  At my appointment this morning, Dr. Hosing took me off all IV fluids and the cidofovir treatment.  The cidofovir was starting to affect my liver.  I will go back Wednesday and if everything looks good, I may get to go home!  She also told me not to pack anything or get my hopes up like I did last time I thought I was going home!  Wade leaves in the morning for Hereford, and Jan is coming to stay until Wade comes back on Thursday.  I’m excited for Jan to come!  I will keep you posted on Wednesday after I see my Team.

I want to thank all of you for your comments, cards, moral support, and prayers!  I appreciate them all so very much.  It truly has made my journey easier!  I have so much love for all of you!

This afternoon after we left the hospital we went to Coney Island and got a hot dog.  Talk about retro!  Here are some pics.  Those chili cheese hotdogs were to die for!

Hope you all have a nice evening, and again, thanks and big love for all you have done for me!

09-13-11

I’m finally back to the apartment and my computer, so I decided to catch up on what’s been going on with me!  The last time I blogged was my first hospital admission.  I was there for a week.  It was a very difficult week, the bright spot being the day Daddy and Jan came to visit me!  I needed to see my Daddy really bad!  And Jan is always a bright spot and I appreciated her driving daddy to Houston to see me and Wade.  They spent the afternoon, we had a great time!  Glo arrived on Wednesday to spend a week with me, and I was so happy to see her!  At the end of that week, the Doctors decided that I could be dismissed if I could control my pain with oral meds.  Up until then it was mostly  IV, pain pump, etc.  So on Friday the 9th I was dismissed.  This only lasted until Sunday when Glo and I made the dreaded trip to the emergency room.  That night I was admitted again, this time to the 17th floor.  This floor has recently been remodeled and the rooms are very nice, large, big windows, you get the picture!  Again , it was controlling pain and side effects from pain medication.  The BK virus is unbelievably painful, and since it is a virus it is unpredictable.  The pain is something I will have to live with for a while.  They got me somewhat straightened out and released me late this afternoon.  So happy to be back at the apartment!  Glo picked the most difficult week to be my caretaker…she had her work cut out for her!  Glo is a fabulous cook, and cooked shrimp scampi over linguine noodles, caesar salad, baked potato, and asiago bread.  I loved every bite!  Tomorrow she will fly out to Montana and Wade will fly in.  I will go back to the hospital and receive the cidofovir which is the drug they are hoping will help with the virus and I will see my team.  Meanwhile it is good to be back at the apartment again!  Maybe tomorrow my team will give me an idea of when I can go home to Hereford.  I am trying to keep my head up!  Here are some pics:

                                                                                                       I look like my daddy…our bald heads even look alike!

                                                                                                                                                                                                                                I love these two!

09-03-11 Happy Birthday Stevie Jill!

It is hard to believe Stevie is 3 years old today! Happy Birthday sweet girl! Wish Mimi and Papaw were there to celebrate! We have been in Houston during all 3 of our GrandKids birthdays 😦
Here I am in room 1002 at MDA….yes I was admitted last night, and after the past couple of days, I did not argue at all! It was no longer possible to manage my pain at home. Here’s what happens with the BK virus – the lining inside the bladder sloughs off resulting in pain, bleeding, and blood clots. This virus is a common childhood respiratory illness, but when it reoccurs in transplant patients in the bladder and kidneys it is very rare. In fact my nurse last night told me she only sees it a couple of times a year. I am on the only med that might work, and I feel like it is helping. Between a good night’s sleep and my pain pump, I feel pretty good right now! My team is doing every thing possible to get me over this so that I can go home. Dr. Hosing felt like I would be here a few days, possibly a week.
Everyone have a great holiday weekend!

09-01-11 Day +100

This is Day 100…that magical milestone that I thought would mean I am at home!  But somebody’s got to be in the group over 100 days to make the average come out right!  I guess I am amongst the “lucky” ones!  I know several of you are wondering what is going on with me since I was supposed to go home last Friday and then when that didn’t work out, on Monday.  And I haven’t posted any information!  I just kind of felt over-loaded!  Here is the scoop:  The BK Virus has kicked my butt!  It is cruel, mean, brutal, and vicious!  And to make matters worse, since it is viral, there isn’t a whole lot you can do for it except to let it run it’s course (4 to 8 weeks).  There is only one drug that sometimes helps, Cidofovir.  Dr. Hosing started me on the Cidofovir yesterday.  It is a one hour infusion 3 times a week.  We should know pretty soon if it is working or not.  Meanwhile, I am on lots of drugs to manage the pain and symptoms.  I have graduated from a journal to keep track of my meds, to a dry erase board!  It is mind boggling to keep up with! The good news is that I came out of the week of chemo in good shape.  It has affected my appetite and lowered my blood counts somewhat, but I have only had to receive platelets.  Everything is good there. Yay!  My team is working so hard at trying to get me home!  They have been so supportive and kind.

Last weekend Wade and I tried a new place to eat downtown, and when we walked out the door there was the coolest little cream puff parked in front.  Since I have posted the Flower Power VW van and the Weiner Mobile, I decided to post this little 280 Z.  Notice the Michigan plates and The University of Oklahoma decal!