|I'm getting some weave braids next....|
|My sweetie....holding down the house, the baby, school, and holding me up! I love you!|
|Evalyn to visit Mommy.|
Last night I couldn't sleep because I guess going to Walmart on Halloween night is not the best thing to show independence, because then I got pretty hungry, and had a hot flash, and by the time I got home, ate, took meds, it was after 12 and I noticed it was Nov. 1st. I got really upset last night and don't really cry too much do to the side effects of being stuffy, and I'm pretty tough now. I wasn't really upset about the date, it's just I don't know if I'm going to live or die and that's really hard to handle, I'm sure you realize. I had so many bad memories flood back to me and I was praying and crying out to God to help me handle this next step.... whatever it is. To be able to come to peace again with his will and my life here, no matter how long it is. I was doing so well, there was so much hope, and honestly it kinda got crushed with this relapse and all this talk about clinical trails. I told my mom this morning, I know the Lord is in control but to just say " God is going to heal me if I believe he will, and I'm not going to die", I think is a bunch of bullshit, sorry. People die everyday, sometimes we don't know why, sometimes is a drunk driver, sometimes suicide, smoking, alcohole, murder, fall in a damn hole, sometimes there may not have to be a "reason". I need to come to peace that if I don't make it through this that it is the life you live here while your here... not how long. If it is God's will for me not to "make it" long term I can only hope and pray that my life means something I don't think my blogs go back to date of Nov 1st but if I repeat myself... well I'm a repeater now anyway. I want to record the good and the bad so sorry this is so negative but this is what happen and it was horrible, but the Lord is still good.
I remember being in so much pain the last week of October, called in reinforcements, was at the hospital on halloween, and on Nov. 1st I went back to GA cancer, again, and that's when they said that my issue was going to have handled at Augusta or Emory. Of course I chose Emory with a family member working there, being closer to my family, Uncle Mike graduated from there, and I had already met Dr. Khoury when I was first diagnosised with CML while pregnant. I remember my dear Poppa Bill wanting so bad to drive me to Emory so bad but they said I needed to go by ambulance. I told them to stay away from the hospital, and still do!, because they don't need to get sick. Judy, my aunt, flew down here on her angle wings, and wrote down everything I might need while these pharmisists were calling out information about the chemo I would be getting. I was in so much pain that Judy went and told them they better give me some damn pain medicine.... don't mess with her, she was an ER nurse. She bought me so much stuff I needed to try and make me as comfortable as possible, my favorite the memory foam pad for the hospital bed that still goes with me for each admittance and to anyone's house, hotel, where ever I'm sleeping. She is a saint! I remember the room, 601, it's the one you start out in and you get to move up as you have been there longer.... it's a horrible room. Dark, next to the door, nursing station, waiting room..... I won't stay in that room I hope ever again. I can't remember which day I got to move rooms but ended up moving twice. The second room had so much electronic stuff coming over the room I could hear and feel it.... I'm a little sensitive. If I ever have money, I'd like to help Emory have a couple rooms for people that very sensitive to electronics, sounds, loud speakers, etc.
I remember missing Evalyn so much but God giving me peace that she was being taken care of by loving people. I remember a lot of sweats, crazy dreams, awful meds, and my stomach hurting because I didn't realize how bad the food was.... Judy and everyone starting bringing food thank goodness. There was a day that I kept having to wait for them to put the picc line and I couldn't eat... I kept waiting and waiting and I was so hungry, newly on steroids too. I was crying that I was hungry and some jerk down there, that was cute and I was going to get him to meet my sister, promised me a BLT sandwich after and didn't deliver. He didn't get that number either, don't mess with my food. One of the worst memories was on Nov. 3rd when the BMB came back that my CML had turned to ALL for sure and I would need a BMT to live. My sister Jennifer and my brother Daniel was there. Seeing my brother weep at the news with me, my sister holding us together, it was beautiful in it's own way. I love you two! Then right after I had one of the most painful bone marrow biopsies ever. There person was in training and I don't think any of the pain medication was getting to me due to being so upset or something but I actually yelled. I started to befriend the nurses, techs doctors, food service, janitorial service staff, etc.... I hope that I was able to cheer them up because they really took care of me. I remember kno
The next week or so I remember lots of noises, lots of people coming in and out, ALL the time, being poked, pricked, watched, questioned "BM today, Mrs. Cape" as loud as you can please, night sweats, freezing after, crazy dreams (see the Dream Blog), nights and days and days and times being confused. Family members and friends coming to see me and all looking so worried like I was about to die. Corynne looking up my arm at all the bruises, being hooked up to stuff all the time, just getting comfortable then having to use the bathroom due to fluids, going crazy and trying to run the hospital due to steroids, pittleing in my room that had become my little world where I had everything just the way I wanted it. I stole my husband's laptop from him, I remember laying in bed with him. I remember migraines so bad that I had to wrap my jacket around my head and then my cuz Andy bringing me a sleep mask that still comes with me. I remember having to ask guests, sorry bro and AJ, to leave due to being in so much pain that sound hurt. Having to be told to swab my butt, learning to wipe left handed (due to pain), Geez, it could go on and I'm really sure I will add more as I remember.
The chemo slowly started the pain go away as I started on the program. They said I would be there at least 3 weeks. I was able to see Evalyn a couple times but it was so hard on her and me just to spend an hour together and I hated to expose her to so many germs at so young. I started to walk some around Emory campus as my counts got better. I danced in the street, went to the museum, watched the leaves change at Emory.... it was a beautiful time. Just not to be in pain and be alive was so wonderful. I felt at peace with God and that I had a new mission on life. Man, those steroids are something else. Then I started to learn about how my life would never be the same.... I recommended a couple weeks ago that they need to offer a counselor / psychiatrist to patients that are new to all that and not just the Chaplin.... what do they know about anti- depressants and pain pills? I would be spending 5 nights out of every 22 or so at Emory getting chemo, start taking more medication I have ever seen, learned that I couldn't garden for a least a year, that I couldn't be in crowds, that I had to wear a mask everywhere, that Evalyn couldn't even get the vaccines she needed, she couldn't be around many children, I wouldn't be able to return to the job that I love, I couldn't clean my own house or eat certain things.
I had so many people sending cards, including the people on my caseload that I missed dearly, hats, I got wigs, we died my hair blue then we shaved it. The company CCS that I worked for was so wonderful and kept me on so I could have insurance and Michelle's visit was one of the most important to me because I was putting Jonathan through school at the time and he only had one semester left. I remember Dr. Khoury saying we had to get rid of my headaches so I could play and sing for him. He did the same for me. Dr. Tyndall played some for me too. I met two people, Marilyn and Janet who are no longer with us. I met Caroline and Amanda that are in remission and doing great. As I'm writing this, I just got word that I'm staying the night here at Athens regional because it's going to be so late when my platelets get done.... go figure. Not sure who is taking care of Evalyn yet in the morning..... blah.
Now, I feel in limbo...... God is being kinda silent right now... I call it the trust, wait, and see me grow your faith game. Well, I'm going to try and relax and maybe watch some Andy Griffith.
I love you ALL. Thank you to everyone that has supported us in a zillion ways over this last year. God Bless!