Wednesday, August 24, 2016

The road to the transplant is not without potholes.

Yesterday, Tuesday, was a big day for us, Bruce, Janet and I had to be in Omaha at 8:15 for a full day of tests and Dr. appointment. We left at 5:10 to give us enough time and it was a good thing, Google Maps took us on 680 and was sending us on west when we saw a street sign for 114th st, the hospital is on 42nd, that was our first clue we were headed the wrong direction!! Bruce muttered under his breath most of the way after turning around and finding us stuck in rush hour traffic. How do people drive in that every day?? Plus I saw two people in bumper to bumper traffic, looking at their cellphones! IDIOTS!!!

Once arriving at NB Med Center, the next job was finding where we had to go because we were not familiar with the huge campus, only being there once. But we found there are helpful people everywhere, all we had to do was stand, looking befuddled, because we were it wasn't difficult, and someone would take pity on us and either give us good directions or lead the way. I thank God everyday for choosing this hospital.

Our first stop was the lab for a blood draw which went flawlessly and the nurse actually had heard of Cherokee because her husband sells insurance in the area and stayed there last week. (I hope he wasn't someone I ran off rudely!)

From there we had to find the pulmonary section for a lung function test, that was where a guardian angel, in a nurses uniform took us in hand and led us right to it. I had to blow in a machine several times and passed with flying colors.

Next was the echo cardiogram, a stress test with pictures of my heart. I was ready with monitors stuck all over my chest and upper body, an IV in my arm when I casually mentioned that I had to be stuck once again for the next test. The nurse asked me what I was doing and I told her a PET Scan. She said, "Ohhhh!" and left the room. When she came back she said this test had to be rescheduled because I could not have strenuous exercise 24 hours before a PET scan or it could result in a false positive. The crazy thing is that I knew that, I'd had 3 PET scans before and that was always on the list of instructions. Thank heavens this nurse caught it because it had gone through two other medical personnel setting up all the appointments.

So off came the sensors, I dressed and we were off for nuclear medicine department with clear instructions on how to get there. This place is huge but they do have good signs and we arrived about an hour early so watched Andy Griffith on ME TV until they came for me. This was at least a 2 hour test so Bruce and Janet went to scout out a place to eat, I'd not had anything to eat or drink since 7 the night before and I was getting very hungry. The nurse left the IV in my arm so I didn't have to get stuck again, I got a radioactive tracer and a cup of iodine laced fluid to drink, it wasn't mandatory if I couldn't hack the taste but it would help the scan. It wasn't too bad if it was cold and I got it down, then I had an hour rest in a darkened room with a warm blanket where I did fall asleep. After an hour they brought in another cup of the fluid to drink, this wasn't as cold and it was hard to get down. 20 minutes later I got to go to the bathroom and then the test began. It takes quite awhile with your arms stretched over your head and it's chilly in that room. The technician not only gave me another warm blanket, he rolled up the towel on each side of the pillow until it was snug against my head and he folded another blanket and wrapped it around my arms and head, I felt like I was tucked into bed. 

I'm not claustrophobic in this machine like SOMEONE I know who has to have drugs to do it! I close my eyes and think pleasant thoughts but I was certainly ready when I heard that I could bring my arms down and was released from the tunnel. Then it was off to find something to eat, all that fluid was not sitting well and they didn't warn me that it would go though me like it did, if you get my drift! I dared not pass a bathroom without visiting. They have great places to eat, it was hard to pick but I thought I better stay away from anything fried or heavy so chose some loaded potato soup and salad bar. Most of it went down good but I gave up on the last of the salad, it was quite awhile before I felt normal again.

Our last stop of the day was to see Dr. Lunning, we were very early for that appointment but we knew he wanted the results of the PET scan before we left and we did too. A volunteer came around to see if we needed anything, coffee, hot chocolate or juice? Bruce and Janet took her up on the offer, I was till digesting my lunch and thought I better not chance it. When we were in the room, Stacy, the transplant case manage came in to fill us in on what was going on, Dr. Lunning was still waiting on the PET scan. When he came in, he asked a lot of question pertaining to how the chemo went this summer and if I had any bad reactions to anything, which I didn't. Then he got down to business, the PET scan showed all the tumors and lesions on my kidney and liver were gone, that was joyful news. BUT, (why did there have to be a but?) there was a new spot on one lung and it has to be biopsied before we can proceed. That took the wind out of my sails, I'd been cautiously optimistic that it would be completely clear. Both Dr. Lunning and Stacy stressed that it might be nothing, a minor infection or a granuloma and we should think positive until proven otherwise. He thought it was highly unlikely to be lymphoma since the chemo wiped out the other stuff but it could be another kind of cancer. 

They want it biopsied as soon as possible because I'm at the stage where it's imperative to begin the transplant before the lymphoma has a chance to get another foothold on my body. I'm looking forward to it because the kidney biopsy was SO MUCH FUN - NOT!!! We will go back to Omaha to have it done so their pathologists can find out and that could take up to 5 days.

So we wait but we know we aren't alone in this journey and that helps. Thanks to everyone who is encouraging and praying for us, we couldn't do this without you. Love you all.  


  1. Wow what a day you had. Glad you know where you stand with the "old" tumors. And yes that spot on your lung could be alot of things. So fingers crossed it is not serious.

    Reading about your scan where they wrapped you up and covered you.....umm not for me....I got all anxious and clammy just thinking about it. Really I did.

    Love to you Julie.....Hugs, Kim

  2. Julie, you are truly Superwoman!!! Looking forward to more encouraging news!!
    Love you, Beck

  3. Dearest Julie - reading this, the song 'one day at a time, sweet Jesus' kept playing in my head. That's all you can do now, wait as the days go by. So enjoy the gazebo, your weed free homestead, your friends and loved ones who visit you (and and remember those of us away from you who think of you with heartfelt prayers) and I do hope you can find peace as you prepare for this next round. So much love!! CG and TW