One year later....Nov.1st 2010 The day the shit hit my face.... there was not a fan in the room. `

               I'm doing my blogs backwards these next couple days. I'll have the fun Halloween weekend one up this week when I finish going through the pics and videos. I'm at the hospital right now getting blood and platelets, and pretty good dinner I must say, so I don't have the stuff on my computer to edit. So don't think I missed a day this time, even though I did think it was Tuesday, yesterday.

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!

Nov. 30st One year diagnosis… looking back Part 1

             

              Last year at this time, we were on cloud 9 because we were going to have a baby and had only known for a few weeks.  We had my first OBGYN appointment a couple days before Thanksgiving and wanted to hear the heartbeat before we gave the news and we also gave the routine blood work. On Thanksgiving Day we gave my Mom, Dad, Jen, and Dan T-shirts to break the news. You should see the video of my mother screaming her head off… oh the excitement. A baby! Surprise! How were we going to do this with me working full time and Jonathan going to school full time? Ha, were we so silly. You can always handle more than you think you can.

                So, it’s not quite a year, its give or take a couple of days. I say a year because for me, the Monday after Thanksgiving was the bomb. Well, looking back, it was just Little Boy, not the big one. My OB called from his cell phone around 8 am that Monday. I didn’t recognize the number and well, it was first thing Monday morning and I don’t like to answer the phone sometimes. Sometimes is not even on. Later, I listened the message: you always find out bad news soon enough. In an urgent voice the doc said, “ Mrs. Cape, This is Dr. L, we have some concerns about your blood work, you WBC is 43,000. We are getting you into see a hematologist ASAP; please call the office when you have a chance.” Google it baby. Well, wouldn’t you have? There were pretty much two choices….. horrible infection or leukemia. No signs of infection, fever pain, swelling, etc. I cried to Jonathan for a minute and called my mom. “Let’s not get upset”, “It could be wrong”, yada yada. I knew at that point… at least I thought I did. I apparently don’t know anything… that’s one thing I have learns. We just think we KNOW. I called the OB office and they said that the Hematologist could see me the next week.  I got the number for the hematologist, called, and the message said “Thanks you for calling Georgia Cancer.  Cancer…. I heard someone else say it now. Oh no, wait a week, I would lose my mind. My Poppa called the office and said “This is Dr. Warren; my granddaughter needs an earlier appointment than next week.” Ok, got it. Funny, I found out later that they thought that it was Dr. Warren that is still practicing in Athens that called, not my retired grandfather. Random movie scene from Spies like us…. Dr., Dr. Dr. Dr. …. If you haven’t seen it, it’s good Chevy Chase humor.

                   The next couple of days is kind of Blurry. We didn’t want to talk too much about the baby. What about the baby? I was of course scared that since it was so early, you know. I went on with work, the next couple days, mind working over time, body so very tired. We prayed at small group.” Lord help us, but let your will be done.” My mom came to Athens for the hematologist appointment AT Georgia Cancer.  I gave the first of a multitude of labs I would give to check my counts. We met Dr. Lloyd for the first time, who also knows my Aunt Sharon that works here at Emory; he said that he tried to hire her. We liked him immediately. He was jolly and told funny stories. Labs are back. He said that I have CML, chronic myeloid leukemia. He said for leukemia, it was the best to have, that with the new oral medications people are living full lives. CML previously had a life expectancy of 6 years before this new medication. There was even a chance that the medication could be cure for some people.  I wouldn’t even lose my hair, hey, wasn’t that the only plus to cancer, I thought, wearing fancy wigs and not having to wash your hair? Oh, I crack myself up sometimes.

                What about the baby? He said that he didn’t feel that the baby would be in danger. If I needed treatment during the pregnancy, we would wait until after the 1^st trimester. The good thing is we found it really early and I didn’t have any symptoms. Who knows how long I would have gone without knowing, I’m not in the habit of going to the doctor. Well, was I wasn’t. Habits change, by choice sometimes, life others.  This baby may have saved my life.  The pregnancy was normal enough and I didn’t have to have treatment. During Dec, I went to see Dr. K for the first time to get a second opinion. My aunt Sharon recommended him and my cousin Kristy came with me to the visit. Dr. K was great and also confirmed what Dr. Loyd said. After we got the medical bill from Emory, we decided to just stick with GA Cancer unless anything else happened. We eventually decided on Evalyn because it means “life”. God knew that my desire of my heart was to have a baby, and we are still not sure at this point if I will be able to have any more children. We have our sweet baby girl now. What a joy!

                1 healthy baby and 9 months later………..I started on the oral chemotherapy with only a few side effects and my counts went back to normal really quick. We even discussed going off the medication in a couple of years to see if I was “cured”. Around the 3rd week of Oct 2010, I starting have serve pain in my head, shoulders, and back. I quickly had my platelets go low and my WBC shot up again. By the next week, I had to take off from work, very rare for me. I'm in a very rare group whose CML advances quickly instead of slowly. We tried to switch medication but I was starting to run fevers and had bruises on my legs. I was calling the nurse and had a trip to Athens Regional for lab work over that weekend. The pain was getting worse and had moved to my jaw bones. I couldn’t eat or talk without one of the worse pains I have ever had in my life. I remember standing at the kitchen counter crying and I told Jonathan,” I feel like I’m dying.” I was right. I spoke to my aunt to see if she would go to Emory with me that I was going to make an appointment soon. Ha ha  Halloween is my favorite holiday and the party of just across the lake. That day was a blur but I’m glad I made myself do something. Hey, we won the truck or treat and Evalyn got to be our hero, Jesus. Corynne came and carved the pumpkin for me. Looking back at pictures, you can actually see the pain in my eyes.

          My Poppa Bill took me to GA Cancer on Monday morning, Nov. 1^st. I couldn’t even drive and thought I might not be coming back. I was smart enough to pack a small bag. I knew I might be going somewhere, the pain was too bad. At the appointment, I had a vein blow up, and they had trouble sticking me. That had never happened in my life. My counts were very high, some too low.  I was sent to Emory for admissions that same day, via ambulance. A few days, I’ll be out…. I had another bone marrow test and other labs that confirmed that it had turned ALL (Acute Lymphoblastic Leukemia).

          I want to right more about my experience with my first few days here, before I started the blog. Honestly, I’m still piecing together those first few days with the help of family.

          I want to move on Thankfulness, Regrets, Hope and Dreams that everyone faces when they realize their time here on earth could be cut short… I want to do a separate blog on this those….. See part 2……