Sunday, November 18, 2012

No fun

The past two day's have been horrible! On Thursday night we started an injection called interfuron. It is supposed to stimulate my new bone marrow so that it can attack the leukemia. The problem is, it is very hard on your body. It gives you terrible fevers, body pain, nauseu, and causes your numbers to drop in your blood. Well, Friday morning I noticed that I was beggining to get some blood blisters in my mouth. In the past I have never gotten those unless my platelets are under 20. And the last time they were under 20 is when I had 3 occular hemmorages. So I went to my local ER and had them check my platelets. They were at 41. That was very strange to me. The on call doctor at huntsman told me that he wouldn't infuse me at 41, but to continue to look for other signs of bleeding. As the day progressed one of my blood blisters got bigger and bigger until it was the size of a penny and jutting out from my cheek so I couldn't close my teeth without biting on it. I knew that it wouldn't improve unless I got some platelets. So I called my doctor back, at this point it's 9:30 at night and he tells me to go to Ogden regional to get some platelets so I wouldn't have to drive clear to SLC. I was also concerned because 9:30 is when I get the interfuron injection and I am supposed to take tylonal and IB prophen with it because it causes such an inflamatory response in your body. I was terrified because those meds would thin my blood even more! So I called up my sweet dad and he drove me down to Ogden Regional. Lucky for us, they were pretty empty so we got right back. However, they had to do a typing screen which takes about 2 hours, then order up the platelets which takes another hour, then one more to infuse. Everyone there was pretty fascinated with me, it was kindof funny! My nurse had never seen a central line like mine before and she really liked it! The doctor was very curious about all that I had been through and sat in my room just talking and asking question for about 45 minutes! Once the platelets were almost done I decided to ask the ER doctor to take a look at my stomach. Over the past two days I had been having alot of stomach pain in my upper stomach, and it was begging to swell up. I told the docs at huntsman about it, but they said to just watch it closely and wait (I am so sick of hearing that answer!) But this doctor began feeling around my stomach and immediately said that my liver was very inlarged. She brought in an ultrasound machine to look at it. She said the tissue walls looked fine, and there wasnt much fluid outside of it, it was just really big! We didn't know if it was graft vs host, which is what we are waiting for, or something else.  So they wanted us to go down to huntsman the next morning so they could run some more tests. So we left the ER at 3:00AM, I didn't get to bed until about 4. Then the kids came in to get us at 7:45. I was so tired but Marc didn't want to let me sleep because he wanted to get to huntsman as fast as possible! When we got there they ran some blood tests and found that my liver enzimes are a little elevated. Not to the point of liver failure, but they were trending up. The other thing is that my platelets were at 31! Just the night before I had an infusion and before the infusion they were 41! So I am really freaking out about my platelets. They are just too scary. They said they didn't want to give me more today because the more you get, the more resistent to them your body becomes. So I am going down to the local ER tomorrow to get them checked again and make sure I'm safe. The next thing they did was a CT scan of my mid section. First I had to drink 4 cups of contrast that tasts like dish soap! They had to give me some zofran in order to finish my last cup! They did the tests and about an hour later the doctor working that day (who I knew pretty good from when I was inpatient) Told me that I do not have graft vs host....:(   he said it looks like the leukemia cells and this new interfuron injection are attacking my internal organs!! My spleen and my liver are very enlarged. Also, the signts where I had my gall bladder surgery last spring, they were attacking the scarr tissue! Those are actually the parts that hurt the most! My stomach is so swollen that I look like I'm 5 months pregnant, and it hurts so bad! But there's nothing they can do for me right now because I HAVE to stay on the interfuron until I get graft vs host to insure my bone marrow is fighting. I get another injection of my donors cells this Tuesday, so that should speed up the process a bit. The other interesting thing they said is that my labs look weird. My blood was full of blasts (we expected that, it's what the leukemia makes) But there is also a large amount of broken cells in there. Most of them are the leukemia cells. So Something is beggining to kill the leukemia! They werent very clear on what other types of cells they found broken as well..... The one dangerous thing about this, is now my body has broken dead cells that it needs to get rid of. Which could cause a blood clot, or my kidneys to get blocked. So I am supposed to drink ALOT of water!
Even though I feel terrible, I am so grateful that I am able to still be home. I hope I am for Thanksgiving! This is a very scarry and long road, especially since I am the first AML patient to recieve this treatment at Huntsman. We really don't know what to expect. I am feeling like it's going to be  very difficult for a while, but I believe this will work.  Now I just have to stay focused on that each day,


  1. H-O-L-Y C-A-T-S! You are so amazing! I keep thinking of the EFY songs "stones in a river" when I think of you. I love your positive attitude. I'm sure if I saw you, you would have a smile on your face! You are such a huge example to me of Faith and positive attitude. You can do this Jan!

  2. Janette,
    My name is Erica Culver and I am friends with Scott and Jodie Keith. We go to church together. We had prayer for you in both of our services yesturday and Jodie and I have agreed to stand in your behalf for prayer each service. I know GOD is able to heal you and that is what I am praying HE does for you. I will also be praying for strength during this time as well as for your little ones and hubby. GOd is able and you are such an amazing strong person. Keep fighting!!

  3. WOW Jan! It's hard to find words... Courage. Bravery. Endurance. Faith. AMAZING!!! You have been in our thoughts and prayers. Thank you so much for keeping us posted. May you find peace and joy during the moments in between the clouds. Love You!!!

  4. Praying for you! I hope you get to be with your family on Thanksgiving! Hang in there!!