Monthly Archives: May 2014

Sands through the hour glass

Like sands through the hour glass…..so are the days of my Leukemia (LOL). Long day in St. Louis yesterday. I have to say the prednisone and other meds have helped with the nausea as I am able to eat and drink some (some is better than none). However, the Graft vs. Host disease is really attacking my organs (not good). I have developed HUS (Hemolitic Uremic Syndrome) which is a condition that results from the abnormal premature destruction of red blood cells. Once this process begins, the damaged red blood cells start to clog the filtering system in the kidneys, which may eventually cause the life-threatening kidney failure associated with hemolytic uremic syndrome. My liver is chewing up my red blood cells so, my blood count keeps dropping and that is why I am so fatigued. Due to the chemo I have vasculitis which is a narrowing of the blood vessels which decreases blood to my vital organs. Of course my goofy self started giggling when he rattled all this shit off – I know he thinks I’ve lost my mind. I just kept thinking in my head, you can’t make this shit up LOL. It is what it is and I knew there were big risks involved in all of this and nothing that we can’t try and treat. Of course Mom left with a look of deer in the head lights as none of this makes sense to her so, while I was getting a liter of fluids (to help my kidneys) we had a our medical lesson. I am off of my anti rejection med for now due to the prednisone and the risk of losing donor cells. I will start pheresis (pulling blood off of me running through a machine and treat it with whatever they chose and reinsert back in) soon and hope this helps the Graft vs. Host and allows my organs to function accordingly. I’m not thrilled about it cause it means I have to leave the garden hose in my neck (damn, damn, damn). Oh well, just going with it. Hey, just another chapter for my book. Stay tuned for next weeks episode LOL. Keep the Faith!

I’m Happy

IMG_0550Because I’m happy
Clap along if you feel like a room without a roof
Because I’m happy
Clap along if you feel like happiness is the truth
Because I’m happy
Clap along if you know what happiness is to you
Because I’m happy
Clap along if you feel like that’s what you wanna do

So this is the 3rd week of fatigue and severe nausea (I know you are thinking then what the hell is she happy about?). That’s not why I’m happy because I’m sick of being sick and tired lol. I’m happy because my Bone Marrow biopsy was AWESOME! I am 99.5% donor cells and NO Mutation was detected (that is amazing). So it’s been 106 days since my transplant and I am still cancer free!!! God is so good. I mean I would consider him still good even if the results were bad. Ok so now on to the nausea and fatigue. I have graft vs. host disease in my GI tract causing these complications. I was taking prednisone to treat it and we thought we had it licked but, as we have decreased my dosage it has flared back up. We decided today to increase my dosage and see what happens (Lord I hate that stuff but, I will do whatever just to feel good). If I am not better by Wednesday they will be scheduling an endoscopy (put a camera down by esophagus to look at it and my stomach) — sounds fun hugh? I’m praying for none of that crap. I received a liter of fluids today as I was dehydrated (well duh can’t eat or drink without wanting to vomit). I am praying for better days ahead but, am embracing this moment and thanking God for seeing me through thus far. I have to honestly say I didn’t expect the mutation to be gone. I know it can reappear at any time but, for now it’s gone and that’s ok by me . Again I can’t thank you all enough for the continued prayers and well wishes – it has helped!!!! Enjoy your family and friends this weekend. Keep the Faith!!!!

Long Day

Hooooo Huuuuummmm…….what a long day in St. Louis. Had to be there by 8:45am, I didn’t have the energy to drive since I’ve been feeling so crappy. Got labs, then had my 2 hour infusion (which I managed to sleep through), saw the doctor, then went and got stabbed in the back for my bone marrow aspiration (I love those…….NOT). My mom has never been with me when I’ve had them so I invited her back. She left the room very pale faced and said she needed to go for a walk lmao. She may need therapy after seeing this. We are changing medications, and watching my hemoglobin (blood) because, it is on the low side. Not sure what’s up with that. My kidneys are still kicking and screaming and levels have risen so we will try new meds. I go back next Friday for labs and then see doc for the results of my bone marrow. Hoping that crappy mutation is gone and that I’ve held on to donor cells. Only time will tell. Hope you all had a wonderful Friday and enjoy your weekend. I’m gonna be lounging around the house. Keep the Faith my friends.

Mama Said

Mama said there’ll be days like this
There’ll be days like this mama said
(Mama said, mama said)
Mama said there’ll be days like this
There’ll be days like this my mama said
(Mama said, mama said)

Sooo, last week I was dealing with chronic fatigue and nausea (big time). Last Friday I felt pretty good as I was able to drive to and from St. Louis. Saturday it started all over again. YUCK! They are thinking it’s graft vs. host disease in my gut. I think so too and the infusion I’m getting doesn’t help matters either. I’m just going with it and looking at as if I were on another diet plan LOL. Maybe I will lose the 12 pounds I gained while on prednisone (nasty drug, nasty, nasty but, boy does it make you feel good). So, last night I went to bed after Blacklist (love that show) and was sound asleep when Penny (my parent’s shih tzu) came in and jumped on my bed. Now you know dogs sense death so as soon as I felt her I shot up out of bed and told her to get the hell out of my room. She of course of nice and cozy and wasn’t moving. Needless to say, I slept with one I open all night LOL. I mean I felt like crap but, I sure didn’t feel like dying. She never sleeps with me so, when she comes in it kinda freaks me out LOL. She’s pretty in tune I will have to say as she stays near me when I’m not at my best. I stayed at Chicken’s Saturday night with her dog and her dog laid around with me as she sensed I didn’t feel well (isn’t that sweet). I did get to enjoy my Mother’s Day. We didn’t do anything until after 5pm so, I was able to sleep most of they day. Not that I haven’t enjoyed Mother’s Day previously but, I have to say this one I cherished and I pray I get to celebrate many more with my kids and family. Just wanted to check in. Thanks for stopping by. Keep the Faith……….I am!

 

IMG_0556

Misbehaving Kidneys Again

I drove to and from St. Louis today!!!! Whoop Whoop! I drove fast just like everyone around me. I even got to witness Karma……LOVED IT! I was in the fast lane behind a semi, this chick was riding my ass, flashing her lights for me to get over which I could not because there were other cars next to me. DUH! I was ready to slam on my brakes and then get out of my car and beat her afterward (hmmmm road rage maybe LOL). Anyway, the semi finally got over, I went around him and got over so the Nascar Driver could do her thing. Several miles up the road there sat Mr. State Trooper who pulled her over. I wanted to honk and wave soooo bad but, Mother wouldn’t let me (Buzz Kill). My liver is behaving itself and functioning as it should (ya) however, my kidney’s have been feeling left out and they have decided to misbehave (sure why not). My creatinine was high (shows reduced kidney function). We are going to see what it looks like next week before we make any changes since I’m weaning off of the Prednisone, it could be that but, have to wait and see. It’s all related to Graft vs. Host disease which happens. A little bit of Graft vs. Host is good, a lot (which is what I’m showing) is not but, we are working to get that corrected. I just go with it, I mean what else do I have to do? LOL. All in all I had a good day. Had to leave at the butt crack of dawn (almost like having a job again lol) as my apt. was at 8:15am. Next week I have to be there at 8:45 and I won’t finish up until after 1pm as I have a bone marrow aspiration (ice pick to the back of your pelvic/hip bone to draw off bone marrow) as it will be 100 days post transplant (can you believe it?)! Happy Mother’s Day, Lady’s! Enjoy the weekend. Keep the Faith!