Hello Leukemia Nation……here’s the monthly update and boy what a Monday it was LOL. Do you expect anything different from me though, ha,ha! Alarm goes off at 0600 – so not ready to get up – still medicated lol. 0615 up……swallowed my fist full of pills, ate cereal, fix hair (ya right – not), brushed teeth, dressed, and out the door at 0645 and on the road to Barnes. Get to lab only to find my dual port will not draw blood ( L O V E L Y). So since I have a dual port I had two needles sticking out of my chest because we had to put Alteplase (a medicine that sits in the lines of the port and eats away at any clot that may have formed and the end of the lines). This medicine has to sit for quite awhile soooooo that meant they had to find a vein to draw labs – needle stick number three (yaaaaa). Went to Dr. he gave me a big hug because he feels bad I don’t feel good. Sweet man but, no sympathy from him LOL – that’s why I love him. We are know I have graft vs host disease in my GI tract as my labs show it. He added an additional steroid that sits in my gut. He has also ordered and Endoscopy (call me Joan Rivers- except they will be looking at my esophagus and stomach not my vocal cords). He is also afraid that the chemo may have damaged my sphincter (flap that opens and closes) between the stomach and esophagus. My eye sight has deteriorated which could be chemo or transplant related. I have an eye appointment this week – hoping no cataracts but, if so we’ll deal with it. My teeth are super sensitive and that is due to the chemo and nothing we can do about it (poop!). I’ve learned to deal with and I will – could b worse. I can now start working out with my resistance bands but, can’t lift weights (afraid I will pop my port out – not good). I was excited about that. Next visit I will get my flu and pneumonia shot. My big bulky mask will be making it’s debut soon with flu season coming. I will only have to wear it while being in confined spaces but, that’s ok might just have to bling it up LOL. I had my last infusion as I have had the maximum dose. We will wait and see what happens. Oh I also bought a beautiful $200 brown bag…………….OF MEDS! UGH! I shouldn’t complain as my insurance has been great. I did call my insurance when I got home because, the pharmacy tech was no help and I was getting pissy with him so, rather than drop to my knees and pray I didn’t choke the boy(not really) I walked away. Prayer probably would’ve been good and I will thank the Lord I did not reach through the hole in the window lol. Hoping for a reimbursement but, not holding my breath. Just glad I have insurance. I hope you all had a miraculous Monday! Keep the Faith, friends!!!
Goodbye garden hose I don’t need you anymore (well right now lol)! It’s out and I couldn’t be happier!!! Now I just wait for the insertion site to heal and the incision
from my port that was placed to heal and we are good to go!!! Moving forward one day at time! Keep the Faith!
Can I just say BEST TIME EVER!!!!! I went to see Steely Dan at the fair last night with Brian & Chicken, Ron & Jennifer Graham, Rick & Dawn Meisenheimer, and George and Mandi Richards. Now don’t get me wrong I’ve been able to do lunches here and there and small little outings but, this was pretty big for me. I have never struggled with anxiety (and empathize with those that do) but, I was very anxious and almost sick at my stomach before going. Crazy, right? Thank goodness I have medication for all of that. Once I was there I was fine. Steely Dan put on a great show (as did some in the crowd lol). It was a beautiful night to be outside. Didn’t attempt any fair food – wasn’t going to push my limits lol. Getting to experience this outing made me feel a sense of normalcy. I’m moving forward and getting stronger, YA!!! It’ll probably take a few days to recoup from all of the walking and the late night but, it was all worth it! Keeping the Faith!
Got the results of my bone marrow biopsy – still 99% donor cells, still no mutation showing up. Things are looking good so we will remove my garden hose from my neck since I now I have port placed. If there comes a time I do need bone marrow the garden hose will have to be put back in but, we will deal with it if and when that comes. Doc says if I don’t relapse within a year of my engraftment the chances of me getting to 5 years goes up 60-80%. Doesn’t mean I’ll croak in 5 years just means chances of the cancer coming back is greater. I said it is what it is and I’m just living each day – there will be no 5 year mark on my calendar LOL. Thank you all for your continued support and prayers – who says God isn’t real? Keep the Faith!
August 14, 2013 my Partner in Crime got me through the scariest night of my life. This was the start my induction process to kick this cancer in the bootay!! I had a crying jag and this was her way of telling me to get over it LOL. We pretended we were drinking Skinny Girl Margaritas. We laughed most of the night which is what I needed. Can’t thank her enough for all she’s done for me. I also can’t thank my family and friends enough for getting me through this past year! Prayers work! Still have a long journey to go but, I’ve got this. Keep the Faith!
Just opened another of many explanation of benefits from my insurance company. It just sickens me to think that my transfusion I go for once a month is over $12,000. Now this is pocket change compared to the transplant bill but, still!!! If I tried to put myself up for auction I don’t think I would get what’s been put into me! LOL…….