Medical update 12/8

I don't know what is it about chemo, but it seems that I can't concentrate to read and getting on the computer is a chore. I wish I could be part of a study about chemo brain, I think they would find that my IQ is decreasing. The chemo went ok on Monday except that it took 3 hours to get the 3 hour bad started due to someone not turning in the orders. I didn't have any reactions, I'm  just very tired but when I sleep it still seems like it's not enough. I had to go back to Emory on Wed and I thought I would be getting the new oral medication from the FDA, but Dr. Khoury said they were having problems getting it and it would hopefully be in next week. Between  riding to Emory, going to appointments, scheduling rides and sitters.... I'm wore out. They did decrease my steroid to every other day which is making me more tired but hopefully I can start losing some weight if I have the energy to move. The dermatologist thinks that the red patches is psoriasis and gave me some cream to try.... surprise. They said they can't do anything about the stretch marks and the PA thought they may be the worse she has ever seen. I also asked Dr. Khoury about who else he is treating with my disease and all is weird mutations with this chemo, pill, and booster shots. Ummmm..... I'm it, the only one. So I'm kinda feeling lonely here and that we are grasping at straws. Thank goodness for all my friends and family that are helping with rides and with Evalyn. I don't have too much to say right now and please excuse me for not returning many calls this week. I just don't have many words right now.

To Decorate or not to decorate

         I guess it's been a little while since I have written anything. This is not a blog about how thankful I am, so if your looking for something to make you feel good..... this is not the place today. Sometimes I don't write for a while because if I write it down and put it out there, it becomes real to everyone, not just me. Believe it or not this past week was crazier than the one before. After Emory last Wed and two Thanksgivings on Friday I seriously could not get out of bed almost the whole day. Part of it was the reduction of steroids again. Up and down, up and down. Then Jonathan's broken tooth became infected and started causing him horrible pain. One side of his face swelled up, he looked funny, but it was sad, especially since there are no emergency dental services closer than Buford to us. You would think that someone in the family would have become a dentist since everyone has given them so much money. So for the last several days, I have been taking care of Evalyn mostly myself and I'm worn out. She is such a blessing but sometimes all I can manage to do is take care of her and everything else gets let go. I'm usually able to take care of myself also, but I did miss a dose of my medication, I just forgot. Jonathan got his tooth pulled and he is feeling a little better but he is still swollen. You people that love Seinfeld remember the episode where Kramer went to the dentist and was talking funny from the novocaine? Ha ha
          I'm dealing with a lot of depression again. Remember, I telling this story like it is and everything everyone doesn't want to say or hear.  Depression is common with the steroid reduction, but also common when you can't do what you want or need to do. I don't even want to open my blinds and see the pretty lake because there are tons of leaves and landmines (poop) that I can't clean up so Evalyn can't play in her playhouse. There are tumble weeds of Chloe hair dancing down the hall as I write, but can I vacuum, nope. We I can but I'm not suppose to.  Should I get out the Christmas decorations and put them on dusty shelves, cause I'm not suppose to do that either. I'm feeling like rebelling though, if only I had enough energy. I'm starting  chemo on Mon, a 4 hour bag, and then my counts are going to hit rock bottom again and I really won't be able to do anything. Then the thought occurred to me that I could abuse my steroids and have enough energy to even go out dancing... ok .... ok ....Heather..... do you really want more hair  that shave on your upper lip or worse, start 12 projects that you won't have the energy to complete? I'm also depressed about how I look and feel. I'm 40 lbs more than I should be. People say I carry it well. Bite me..... but gently, because I have skin is so sensitive that it hurts to rub in lotion. I don't think I have shared this tidbit of joy.... because of the rapid weight gain from the steroid, I'm guessing.... I see a dermatologist next week, I have the most hideous stretch marks under my arms, breasts, hips, and thighs. They are not your run of the mill stretch marks... they are very deep, you can feel the indention in my skin and they are very dark. Oh, and worse of all, they hurt. It seriously looks like I have been in a horrible car accident. Luckily, they are accented with the oval red scaly patches that itch me to death and the last dermatologist just said that they were "interesting" and " to try this cream."  My hair is going is 107 directions. Do you have any idea how hard it is to wash your hair and keep the PICC line area dry? Well that is enough complaining for one blog....
 Trying not to scratch,
Heather

You can leave your hat on

                I’ve been very nervous this week waiting to hear the result of my tests from last week. There is good news and bad news of course. The good news is that I’m in remission again but the bad news is that keeps me off this clinical trial that Dr. Khoury felt would be best for me. I will have to start IV chemo once a week starting next Friday, get another oral chemo from the FDA, and do the “booster” shots with the left over stem cells. The next question is WHY do I still have to have treatment when I’m in remission. Because remission is not the same thing as cure. I found this website that has definitions and explains about ALL and how it different from other other cancers. Click Here if you want to know more about ALL then you ever dreamed of…. Or don’t .

                       I have spots that have come up on me again and they are starting to itch like bug bites but  I know that’s not it. I can’t stand to itch, I’d rather be in pain… well a number 5 pain. It’s affecting my sleep and I can’t function well on no sleep. I’ve banned myself from driving for a little while, at least with anyone else in the car, until I’m sleep better. One time I drove sleepy from poison ivy and my car ended up hitting a house, no I was not in it. I didn’t put the parking brake on high enough. I walked inside the house and heard the doorbell. 2 neighborhood kids with dumb founded looks on their faces told me what happened. Another witness said that the care missed my mailbox, cross the street, dodged 3 trees, pulled up this ladies bushs, knocked down the flag pole, and then hit the brick house. My car was way less to repair then the house. What a way to meet the new neighbors. At least I had accident forgivness with Allstate…. NOT….. that’s are bunch of BS. If you hit a house and it like 10,000 to repair they are not going to forgive you and will drop you like a hot potato.  Jonathan was so sweet that day and didn’t fuss at me at all, he was just glad I was ok.

                           It’s been difficult week energy wise because all my sitters of all with their families for the holidays and Evalyn has not been feeling well. Even though it has been hard, we have enjoyed spending time together. She learned how to say Wallace, without the W, this week and has had so much fun dressing up with her jewelry, reading books, and naturally seeing how many hats she can put on her Daddy’s head. She has so much personality. The funniest thing is that she love to wear this gangster cross necklace that was her Great Nanny’s. It’s made of leather so she can break it like most stretchy necklaces and it doesn’t tangle up. She is still testing us when we ask her to do something but the parenting book we are reading has given us so new ideas such as not asking questions when the activity you are suggesting is a non negotiable.  We also understand better that she doesn’t understand right from wrong yet and is unable to grasp a lot of concepts pass the momentary “ I want that.” It doesn’t mean the behavior should continue, it means that it is a correction not a punishment. That made me feel better. We are still discussing the suggestions we are reading about and will then try to get everyone on the same page. 

My plan of letting her play with her hats and she would start wanting to wear them has worked! 

She loves to stack as many hats on her daddy's head as she can. 

"yea you can have a hat, but it's gonna cost you" in a gangster voice. 

This video is Evalyn kissing Luke, her cousin once removed, it was a little while ago. 

                               We had a busy day Thanksgiving. When I first opened my eyes this morning, I thought, “ there is no way I’m going anywhere.” As I said before I’m not sleeping well and also having crazy dreams that even wake Jonathan up. We were able to see a lot of people and that was great but need to spend more time with them outside of a holiday dinner.  More quality time during the year I guess. People are always welcome to come here and visit and when I’m able to get out more we will visit you! It’s was great watching Evalyn and her cousin interact. Evalyn’s favorite part of the day was seeing Tucker, her Grandpa’s dog, Jonathan’s was seeing Jeff, and mine… it’s a tie between the cream corn and when I said Damn in front of everyone and it got quiet.

                        I hope you had a wonderful and safe holiday!

Thanks for all you prayers, sitting, cleaning, gardening, dog sitting, rides, and financial support. Knowing so many people care about me living helps me to care when things get really bad. If you want me to add some cheese to it I could say, “ You are the wind beneath my wings.” 

Love,

Heather

Medical Update and Birthdays!

               This week has been crazy…. I don’t remember Monday, except I had a headache. In the middle of the night I woke up with a full blown migraine that would have normally been an ER visit but we have a toddler and ER’s are very dirty. I toughed it out till morning, got a sitter to get Evalyn, went to the doctor and waited quite a while to get some IV meds.  Im so sorry for people that have them a lot. I went to the doctor with sunglasses and a mask on, I looked like the uni- bomber. My Dad, Bruce, drove me and had to sit in the darker room with me because the lights were killing me and I was seeing purple and Fay got the easy job of watching Evalyn J.  So Tuesday was pretty much shot.  Wed and Thurs…. I still think the migraine meds were in my system, I cancelled most activities and remember some weird dreams. By the time Thursday and Friday came I was exhausted. Again a short day at Emory turn into a long one with an EKG, x ray, extra lab work, and a bone  marrow biopsy, which is still a pain in my rear.  These are part of the tests I have to pass to get on the clinical trial I need. My father in law and I, thank goodness, missed rushed hour.  Then my parents arrive with their lover bird beagles and my Dad helped drill some holes and hang some things, and my Mom assisted with Evalyn which started to get sick. Jonathan and Dad went to the football game and I messed around with paint and probably some other things I’m not supposed to do, it was too painful to sit on my bottom.

              Now that it is Sunday… I can’t believe that this week is Thanksgiving. If you know me you know that I’m not fond of the holidays because everyone gets so bent out of shape for so many reasons, drink and drive more, more sickness due to time of year etc. Stress is at an all time high for me with starting this new medication. I’m phase 1 of the trial, I asked Dr. Khoury what my number is, how they will identify me in the report, and he said that I don’t have one. First time I didn’t believe him, they just haven’t assigned me one yet. I’m trying not to do anything that could mess up this trial, mostly trying not to get sick. So I’m staying close to home and asking everyone that is sick to stay home…please! You can help by praying that I’m able to pass all the tests I need to get on the trial, that side effects are not present, that it works, and of course that I get to live.  Generally, I don’t have a lot of energy and having a lot of hot flashes!

Happy Birthday!

            Three of my 30 favorite people had birthdays this week. Today is my mother in laws, Carols, birthday. She is a part of the code red team.  My husband turned 32 on Tuesday.. Luckily, I was feeling a lot better by the time he got home from work so we were able to go out to eat, and use a coupon and gift card! Woo hoo!  Evalyn turned 16 months  and let me tell you, she is really starting to assert her independence, test the boundaries, etc with me and her Dad. She didn’t try and eat the crayons the first time she experienced coloring so that was good.  Kathryn, one of my beautiful cousins, turned 16 this week! She is incredibly talented and I can’t wait to see one of her plays. I’m trying to talk her into going to UGA. I need to add some pics to this blog... but that would require more energy then I have right now. 

             

down down down the steroid ladder

              I just wanted to let everyone know that I’m still kicking. Friday my labs were ok so I didn’t have to stay and was able to ride back with my mom to Cartersville where me, Evalyn, and Wallace spent the weekend. Jonathan got a weekend off and went to the game, it's his birthday week! He will be 32 tomorrow! I was, and am, pretty tired and weak due the such a fast decrease in the prednisone (at 20mg right now!) and didn’t get on the computer or hardly talk on the phone the whole weekend. My parents are going to have to get an elevator with all those stairs.  I was able to spend some time with my mom, dad, and sister. We were missing Daniel though. Jennifer took me by a little antique store that I really like and of course I found the perfect end table for my guest bedroom and or course it was too much and I even haggled with them with my mask on and managed 5 dollars off. Blah  Evalyn had so much fun playing and dancing at my parents house. She likes football games, which is fine, when she is a little older I’m sending her with her daddy and I will have Sat to myself. She is super cute in that bulldog outfit and will get very upset if you try to take it off.

             Medical stuff…. Well…. Lets just say my life is being held in the balance…. Kinda feels like God just has me dangling by a few fingers and not covered in his hand. Woooo, isn’t this fun? Surprises at every  corner…. Come get your popcorn. Yes… I am crazy.  I still have a lot of hoops to jump, who am I kidding, a lot of hoops to crawl through to get on this clinical trail. My LP came back negative, meaning  the cancer has not spread to my spine, praise the lord, thank you for all your prayers. Next step is getting off these steroids without having Graft verses host disease (stomach issues and rashes are what I have had before)… that’s enough to pray about for now. Otherwise, I'm just very very tired and not sure how I'm going to make it through this week. I told Jonathan I needed a maid, a gardener, a secretary, a sitter, and a personal driver. What are you doing at 5 am on Friday.... feel like going to Emory? Rides and sitters needed! 

                   

Heather the Victorious Protector AKA tattle teller

               First, I want to say Happy Birthday to one of the sweetest 9 year olds, Elise Lane. I’m so proud of the little lady that you are becoming and can’t wait to visit you at your new home! Keep up with the recorder!  I love and miss you girl, there is a certain pic I'm looking for you right now to put on here. It is also my cousin John Tyndall’s , ummm, birthday today, ok 32^nd! Johnny and I had tons of fun together along with his big sister Shanna, as kids running around at their house and our Nan and Pop’s.  Ohhhh, some fun memories of Easter egg hunts, knocking over huge ant hills, getting hurt and healing together, Disney world, the beach, smoke in our eyes, couch forts , planning, and sneaking, throwing cigarettes,  and loving life! Happy Birthday!

1982 maybe, me and Johnny, what is on my face?

                The more I start to come around from the whole relapses, being in the hospital, meds, different chemo, change in routine again, etc, the more and more I realize how out of it I was and how much I still do not remember. I feel  like someone with dementia that is just realized that I had a bout of it and try to figure out what happen to that time. Who gave me this cute pin that says hope, I don’t remember, what day did I go back to the hospital, I don’t know, did I start that med during the hospital stay or after, heck is this the med I should be taking. It’s a very daunting feeling to lose time and memories. I’d liked to think that some of my brain cells are just suspended and will come back like before, but as days turns to weeks I think I got a good blow to the IQ. I still think I’m smarter than the average bear so that’s good. I had to accept a couple of things this week… that I will probably never model again unless I luck out with some catalog work in my 40’s/50’s…… and that going back to school for anything very difficult such as medical school one day might be off the books. Who am I? As God continues to mold me I continue to add to the answer to that question. Today, I’m Heather the victorious protector over the employees at Emory.  Let me start from the beginning, of yesterday that is.

2008 I love the old pin up styles! 

               You know that when you hit the notoriously elusive skunk with you Poppa Bill’s sweet black Cadillac, at 5:20 am on the way to Emory, it is going to be an interesting day. When I say “you” I mean Jonathan, he hit the poor thing, however, being his partner in crime I agree with his decision to straddle instead of zig. At that moment you realize you don’t know what the intake is set on, how to change it, or even where it is at and of course you didn’t read the manual because who actually does that on a borrowed car or even your own? We could defiantly smell it but it only hit the bottom of the car and not the full force of a direct hit, as my Poppa said happened to him when we called to let him know. He said that he even had to get the seats taken out of the car to be cleaned! They are actually sweet animals that some have had for pets, anal glands removed of course. I wouldn't mind a vintage skunk hat. Should have picked that one up!

                    We were now awake after the incident and headed down the dark empty road pretending we were rich enough to own the car we just abused.  Like most bumps in the road now, we don’t sweat the small stuff as we used too. For some reason we have a huge amount of Panara Bread gift cards, not that we don’t like Panara, I’ve just never been able to go into a place like that with some healthy food and fancy coffees and think “I can get whatever I want, I could get two, I could try something and not like it and it doesn’t matter, and for lunch I’m going to stop back by and try that, ooo, maybe I should bring so and so this today.” It was quite the excitement for this girl. Jonathan I arrive early to the clinic for the appointment and sat down for what should be a short appointment. Dr. Khoury ended up running late. Next thing you know… Jonathan and I both are sick at our tummy’s from either nerves or the coffee, I’m scheduled for some stitches for my line with very rude radiology, and an LP with chemo. They didn’t find anything wrong really to decide to necessarily do all that yesterday but I have been having a lot of headaches and it was something that needed to be done weeks ago and I’m needing the stitches in my new line to make it more secure. Ended up that Jessica would be able to do the LP, and believe me, she is the best there and I want Jessica!!  My appointment wasn’t going to be till 12:30, so I had some time to waste, more wasting time, but then again I know someone that said with God there is no waste and I can really see how he worked yesterday.

                 My insurance is amazing with wigs, they are free and unlimited. I decided to see if the lady at the boutique could work me in. It ended up that she could, which is rare, and I was off to discover a new wig. I like it a lot and I also got it in another color. It’s kind of the 70’s shag hairstyle I was working on before dying my hair blue and shaving it off.  Elizabeth was wonderful and gave me a lot of tips and ideas.  I was pittling around looking at the books in the boutique after the appointment, when this obviously upset and pissy woman storms into there asked the receptionist about her husbands sock order (yes, just compression hose people), and she is told that the shipment came in wrong and they should have them next week, so she insisted on going to see the lady I just had an appointment with. I was the only other person besides her, the employee, and the mean lady who knew or heard what happen when she harassed, yelled, and fussed at her about the sock order. I was so shocked at what I was hearing that I think my mouth just hung open as I obvious had a choice to walk away with a “none of my business attitude” or “I’m going to witness and assist attitude”. Well the choice was made for me because I couldn’t move. The lady finished her off with the last bite saying she would be back later, left the staff crying, and started toward the door. It’s one of those moments you look back and think 'I should have punched her in the nose', or said something, or tripped her….. or something really crazy like start praying out loud for her and chase her out the door yelling “be gone Satan, into those pigs over the cliff!” Nope, just should there and looked at her as she walked by then yelled to the staff, I’m so sorry!!! She came out upset and I opened my hugs and just hugged for a good minute. We told the other employee what happened and I started to try and pull myself together  for my next move. I added to my bag a wig and two free hats, if they had had a Ty skunk, I would have put it on my shoulder.

My button says "Fighting Cancer and still Fabulous " with a pic of a pin up girl.

                         I decided to wear my wig for a while as I would see friends and staff that have become my friends. I went to the café to order lunch for Danielle and me and was going to take it down and hang out with her during her appointment and wait on mine. It’s the only place the food is decent right there and the manager is always so happy, he makes me smiles as he works like a busy bee.  I was still swelling from the boutique episode,  when I decided to take a swift left off the elevator to talk to the receptionist Ann. I told her a little about what happen and that I wanted to make a report of some kind. She sent for Harold, a young guy who recently took this position who was so nice and quite handsome, to speak with me. I let him know what happen and that the lady said she would be coming back and that I felt that she should not be able to use the boutique, that she could get her damn socks somewhere else. He thanked me and later I got an email from the employee which makes me feel that hitting a skunk first thing in the morning landed me in the right place at the right time.

“Hi Heather,

After you left, Harold came to see me and said that you had approached him about witnessing the patient berate me. He took a report and will add it to the patient information, sadly she and her husband also are employees here at Emory. She did come back as promised and I sent her to my manager for resolution which seemed to work out. Then I came into my office and saw the inspirational note and gift you left for me.  That made a big impact on my state of mind. Your passionate words went straight to my heart. Thank you for offering your hug to me at that time, and praying for my well being. I appreciate your kindness and will remember it always.

Warmest Regards, the boutique lady.”

I won’t be so nice if that ever happens again, I’m a bulldog, gurrrrrrr.

                 Feeling chivalry, I marched into the infusion center like I owned the place, right through the doors, to find Danielle and receive my medal of tattle telling, instead I see Jonathan looking for me and apparently Danielle didn’t hit anything this morning, and had just left. Sad not to have seen Jonathan in his suit, but glad to have someone to watch over me now, we go back up to the café to  eat the lunch I just bought, except we had to swap. We had a nice time talking, eating, and not taking our time. We decided to go to the store to see if I could find something for you know who, and added a prescription and some gloves to the rolling circus, still wearing my wig while I had a hot flash.

                 Appointment time finally arrives only to find out that not only do I need platelets now but that my LP and radiology appointment had been moved to earlier and no could or  did let me know. More waiting… eat a snack, flip through the mags, Jonathan goes for a walk, I get a warm blanket and listen to the man near me snoring.  Jessica did a great job with the LP and I’m thinking, there is chemo going directly to my brain right now…. This can’t be right. We get through that and the platelets and leave the exact time that we try to avoid by getting to Emory at 7 am. Traffic is a horrible thing, and our HOV lane is all messed up now. Thanks to the gift card we stop and get some yummy smoothies.

      

                      We made home around 7 or so just in time to visit with mom and Evalyn a little while before bedtime. My mom is a wonderful grandma. Evalyn just loves playing with her and they might be just as silly. I watched my mom play with Evalyn on Thursday, running back in forth in front of the swing, as Evalyn’s laughter filled 3 back yards. We are so lucky that her cancer was caught early last year and that she is cancer free. Praise the Lord! We have had a lot of kindness this week with flexibly with work, help from 3 sets of grandparents, a new sitter and friend, food, borrowed cars, rides, garden work, and we are truly thankful. Evalyn was fighting a cold and we hope that she has won! 

Evalyn reminds us to look at the beautiful world around us.  Her favorite thing to do right now.... collect acorns.

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!

Medical update 10/28/11

                  It’s been a rough go the last few weeks. Between the 2 weeks in the hospital, 4 days of stomach issues, 3 days of Emory, by the time I had a sitter to go to yoga on Thursday, I  just came back and slept at the house for 3 hours. Yes, somehow I made it to and from Emory this week 3 times without getting admitted. Thanks so much to everyone who gave me rides and came with me.  I think he just wanted to actually lay eye balls on me since I was so sick. Right now, there are 5 oral chemo pills for CML, AML, ALL. 3 have been all approved and won’t work for me because I’m a freak. The 4^th one I could get pretty easy because it has already been approved by the FDA but Dr. Khoury wanted me to try the 5^th one that is in clinical trials because I can always go back and try the 4^th one.  When, When, When do I start is it question….. I don’t know people. Unfortunately, I have no control over anything.  I have to take like 20 tests and show that my blast crisis ( WBC’s not working right), with two not one Bone marrow biopsies, are below a certain point.  I actually want them do an LP to make sure that it has not gone anywhere near my brain. That’s all I need is a brain tumor. I’m going to Europe and running up a credit card if that happens.

                     Great News! My friend Danielle seems to be doing better. She was actually able to speak when I saw her at Emory on Friday. We didn’t get to catch up very much but maybe I can talk to her on the phone tomorrow! Also, it was really cool that two of my readers recognized me and said they like the blog. Thanks so much Dan and Charmaine for your comments and encouragement.  Thanks to the amazing employees…. Selena, Joy, Harold, Jason,  Ramirez , and the list goes on and on.

Go Dawgs! Video of Evalyn. 

Here is a video of Reggie singing me a song when I was in the hospital. Thank you.

Cancer, Chemo, Crap, Clinical Trials, and a Cape

(A guest blog by Jonathan Cape)

                I am writing for heather today, because the IV chemo has been rough. She is currently sitting in her bed with her eyes closed, looking like she is trying not to throw up.  She has thrown up a few times over the last few days, has loose bowels (that’s code for the ‘d’ word)  and has had awful headaches.

                Heather was supposed to go home today, but that didn’t happen. They kept her here because she had a fever and very low platelets (she’s at 4000… at 3 times that, they would have still given her a platelet transfusion).  Doctor Khoury walked in right after I did, and he told us that her fever is gone and that she’ll be going home tomorrow (though nothing is ever for sure around here until it happens).

                We got the news today that they did find that the cancer cells have a mutation.  That mutation makes Sprycel ineffective, which stinks because that was the last of the three leukemia pills… but on a positive note, the Sprycel made Heather feel like crap and now she doesn’t have to take it.

                So in about a week and a half, she will be starting a clinical drug trial.  If that drug doesn’t work, then there is another drug on trial to that she can try.  (And I found another positive note:  because the drug is on trial, that means its free. FREE DRUGS!!!  YEAH!!!!)  Please pray that one of these two drugs works.

               

                So, in closing, let me tell you how wonderful my wife is.  This girl is in real pain and is sick as a dog (that’s a weird saying… our dogs are barely ever sick), yet she makes the best f it.  She sings for patients and doctors, she prays for people, she spreads the word about ‘Be the Match’, and she does whatever she can to make this situation not so bad.

                Don’t get me wrong, she has had some rough times, and she may want to give up hope, but she won’t.  She’s too strong.  And she’s too stubborn. And she’s a fighter.   She’ll win this fight.  And the Lord will win this fight because of her.  Even if cancer takes my wife from me one day, cancer won’t have won.  Cancer has just given her an opportunity to shine… an opportunity to tell this world about our Lord’s saving grace and about her story.  And we’re all better people because of grace and because of Heather Warren Cape and her story.

So what stage are you in?

       I don’t have much to say tonight but feel I need to update you all on some things to let you know I’m still kicking. Sorry for all the unreturned phone calls, I’m out of words right now. I’ll tell you my theory on that one day.  I’m working through some tough stuff right now and not ready to share that yet. Plus, I had some new chemo today and did well with it but my brain is fried. I woke up one night, not remember where I was and did my normal call to Wallace, my snuggle buddy, “Waaaallllllace, Waaalllace”, then I opened my eyes and relized where I was , well shit.
       I can’t tell you the curse words that have ran through my head or out of my mouth in the last couple days. Or the ripping of my heart when Evalyn was so depressed that I was not home after seeing me that she threw up, Wallace did the same thing last year at this time when I was first admitted. Evalyn missed some meals, and if you know this girl, she likes to eat!! The sadness I feel when I think that I was just beginning to rejoin society through volunteering with music, dance, yoga, trips, Nashville this weekend, weddings, concerts, 6 months away from gardening, going to the council meeting in MN, advocating more for Be the Match, enjoying watching Evalyn play with more children, etc, etc, it’s a big hit to take right now. Getting a Picc line again, starting over on medication that I was almost off of and not knowing the “plan” past the 28^th of this month is nuts. The possibility of another stem cell transplant, ahhhhh.  Hmmm, grief, depression, denial, anger, acceptance…?????..... Haven’t I already been through these steps? Here goes round 3 (counting the first diagnosis when I was preggo).

                I’m still reminded of the kindness of people through finances, food, gifts, baby sitting, food, prayers, letters, words of encouragement on my page, scriptures that people have sent to me, the compassion of the nurses here, the people at Jonathan’s work supporting him with things that Evalyn needed and some gummy bears for him J, great visits from family and friends, and the list goes on and on. My cuz Andy spent most of the day with me, brought me lunch from Whole Foods (which I still won’t step into due to knowing I will walk out in debt).  We had a relaxing time. He is truly one of the few people I can spend all day with… I have not really made a list so don’t ask me if you are on it, it’s not you, it’s me.  I’m still a lucky girl, just an unhappy one right now… gotta get my head on straight. My farm friends…. I hope you are taking care of each other. I will be a doctor this year at the Halloween party since I have to wear my mask again.  Jim, stay off the roof, for goodness sake, but catch me some fish!

Well the good new is that I DON't have a brain tumor

Enjoys nature like her mom and big sis Corynne.

Few pics you may see of me ... so get an eye full.... wait thats a stomach. 

She loves her little outside treasures.

She was either looking for my phone or found a new place for the acorns. 

                             
               As I was laying in the most annoying sounding machine in the world for 30 min ( jonathan and sean, I know you are thinking of dumb and drummer),  I was able to ponder about what if it has spread to brain, not that it still couldn't. I kinda came to the conclusion that if that was the case, I would go with the flow and at anytime that I may be faced with dealth, I will try to die with some dignity and not a hole in my head, although my granny says we should be as humane to humans as we are to animals. That thought process gave me some peace today. I will not lose my dignity though and do not feel bad for that. God said that was ok too. He has lead me to several people already. I gotta hold on to the fact that my own pain helps others.
                I met a lady who's sister is dying, they were coming to take her to hospice. She has such a rare cancer that here is only 8 documented cases in the world. I met her the next day and she said she would like to listen to me sing, in her own way, she can't talk. After I sang some worship songs for her, I was able to lead her through the sinner's prayer. Not sure if she said it in her heart or is already a child of God. Thank goodness we watched that awesome movie with Robert Devell "The Apostle".  It reminded me again about witnessing to other even though it may be tough. She had some tears running down her cheeks and she seemed to be happy. I played for another guy, and he requested for classic rock, so I did some songs for him and it seemed to cheer him up.

           
       I'm sure that you all realize that this has been a very difficult few days. Evalyn has been so depressed that sometimes she won't play, and just lays on the floor. So sad. Jonathan is taking off two days from work, Grandma Judy is helping out one day, and my brother and Father are helping on Wednesday. Mom will have Evalyn again from Thursday to maybe Saturday... depends if I get out of here early or not.
      The only time I have really about lost it in here was last night, after 4 other med errors that day, when I had my 5th night migraine in a row and the PA was suppose to get the IV pain meds in place for middle of the night and it didn't get done. I made it until 6 am to call Dr. Khoury, he said that he was surprised I waited that long. I told him that I will not be so nice next time. Either way, the team has to get it together and realize that I advocate for myself, know my meds, know when I take them, and don't have to wear this damn arm band if I don't want to. I also refused a prego test.... hello???? A complication beside the migraines is my blood sugar level due to the high doses of steroids and I have already had 3 shots today. Please pray that I don't get mouth sores, this is new chemo for me, so the side effects are unknown. The time of chemo is unknown. Heck, I don't even know if they have the orders.
      I'm about to be flagged again by the dietary department for sending food back. Don't worry, I am eating. I made my own salad and tomato sandwich today. I've requested muscadines from a friend in Athens, keeping my figures crossed, and have lots of snacks and people bringing me good food. I've had great visitors including my hubby, sister, brother ( who is one of the few people that I'm truly glad to see when I wake up), He sat in here listening to me snore for 10 min before mom got here.
       What's today? Oh yeah, Sunday, he he, I called my mom thinking it was monday and she was on her way to work at 6am, then later I labeled some of my food with a date in May. Wow. I saw mom yesterday and maybe someone else... I'm sleep deprived beyond doubt. Grandma Judy came to see me... she just can't stay still, she will be driving to athens and taking care of Evalyn all day on Tuesday.  I did miss this movable bed, thats the next temperpedic bed purchase when I'm rich. I also had a wonderful visit with Evalyn , Jonathan, Anna, and her boy friend Charlie. They were able to help out last night so jonathan could watch the game at Daniels house and came to help Jonathan on the drive down. Evalyn was and is very interested in picking up acorns, sticks, and leaves, so we know how an outside basket for her treasures that stays outside until she decides to stop eating tasting them. Jonathan's cousins, that I had not met in person, come to see me. I gave them a baby potty, it's vintage and super cute.
      The next few day are really going to determine the plan for my treatment. We are still waiting on the labs, possible new donor cells for those "booster" shots I may can get, and if all else fails, another transplant... that is not what the Dr. wants nor I. But I will have some more rules... taking a step back. He said that he will let me know how far back when I'm discharged and my status. I'm in blast crisis again but there is still 20% left of the donor cells in my bones. Cancer is weird... if it kills you, it kills itself, seems like it would want to be more of host for a long period of time. Since I have been here, I have told about 6 emory employees that about 'Be the Match' and how easy it is to be donor.
       I have plenty to do, with my 12 hobbies, so don't be disappointed that I don't have an awesome view, I like low light and I think this room is very quite. I think the view make the visitors better, like I'm going to stand at the window and be like "oh well, there is the outside world, that I can't go in"  No thanks, I'll just recreate my little reality here. Crap, forgot to get people sign the guestbook, don't forget when you come!!!! I have my Dad and a fellow ALL surviver coming tomorrow and on Wednesday, Danielle, her mom, and my my cousin Andy will be coming. Jonathan will come again on Thursday, but I'm not sure if I will see Evalyn... again depends on my counts.

Sister Anna and boyfriend Charles.. he does dishes, but they ate my cake.... bad move.

               Anyone willing to fix some homemade for Jonathan would be helpful, even if I get to come home this week it's going to rough with Emory appointments, transfusions, more labs, etc. He's not going to be able to take off next week unless it is an emergency. Please continue to keep our family in your prayers. I'm convinced that watching someone you love go through this is as hard as going through it, well almost.They are helpless a lot of the time, I can at least pull the cancer card. Good new is, my hair should not fall out yet, bad news is that my leg hair looks like it needs a weed-whacker.

Really, is this nasty bruise on my body? ughhhh. 

Relapse admission 10/7-the one day I didn't bring my pillow.

My sweet Evalyn rose and Me!

   
       I'm in the process of being admitted, they said for at least two weeks, freaking out to say the least. I will add more to this post later, first I have to find some food before I get to my cell. I'll cheer up I suppose, but right now I'm overwhelmed, pissed off, and need my baby girl near. I just heard 2 helicopters and two fire alarms (guess they where being tested at 5 am). What the crap.

Of course some people enjoy confined spaces- Avery, Leslie's little girl. 

        Here is what has happen today. My counts continue to go up and Dr. Khory said that I'm indeed in the blast crisis again and they needed to admit me to get it under the control because trying to take care of it out-patient just doesn't make sense. I fell over in my chair when he said at least two weeks and starting crying.... just thinking of missing another 2 weeks or me.... I thought he was going to say 2 days. I was  alone at the appointment, which was fine. He got me through admissions. At least I know a lot of the nurses and the main staff. They all welcomed me. Dr. Khoury said that he can still "fix me" and he is not just admitting me for show. I reminded him that he always said he would not let me suffer and he said that we are not at that point.    
        I got a new PICC line in yesterday, (Friday) this one was painful, I guess because of all the scar tissue. I had two veins blow while they were trying to give me platelets. So now I will be taking tons of pills, snorting spray, rubbing gel on my muscles, wearing compression hose, shooting up hepperin, taking eye drops, desolving meds in juice each night (but only 2 hours after eating, I'm sure I'm missing something.
       Oh the rules.... I think from what the said I'm back square one, or another square one. First the picc line 2nd, they are starting to load me up with steriods again,ahhhh, to get ready for chemo, upping the Sprycel (oral chemo) that might make my head explode, I'm sure I'm missing something. Also, my rules have changed again, I can't do the stuff the I started to get again which makes me feel like a rat in a cage, (Smashing Pumpkin fans). We are waiting for some more labs back to see if I have some sort of mutation, and then will start on chemo at the beginning of next week and then we go from there... possible "booster" type stem cell infusion  and the last option is another stem cell transplant. I'll tell you the truth, the odds are against me but  I've always been odd myself.
      I was able to discuss becoming a bone marrow donor and how easy it is to my transport and radiology team and gave them my card. I asked them to sign up not only for others but to make this hospital worth something. My room number is 607 at this point on 6E in the VIP section of the hospital (just kidding). Of course, I have moved  my room around and unplugged the phone first thing.
       Please contact me via email, face book, or cell phone if you would like to come visit. having too many visits at one time can be overwhelming. I don't like talking on the phone to much and telling the same info over and over not only to love ones and friends, but also the 12 people I have coming in here today.
      Thank you so much to the people that made financial contributions, Jonathan's work for letting him leave work early and of course taking up some money for medical bills and travel, and also an uncle willing to drive me home probably in traffic. Mom got off work, Daniel babysat yesterday, my sister came to visit, and my Dad come down really early while Daniel was on his way. We are truly thankful!!!
        My family needs a lot of support right now, like hanging out with them , letting them vent and cry, giving them support, cooking for Jonathan so he doesn't get too skinny, offerring rides to Emory and back, babysitting Evalyn (mainly at our house, so she can stay on her schedule), cooking dinner on the days Jonathan works, helping with the dogs (they get left out sometimes), etc.  Please know, I'm putting this on here because people have asked me what they can to do help. I would love to see some people even empty-handed but with a full heart! We will not starve,we have a roof over head, and lots of support. We do not expect anyone to bring or do anything else except close family of course.  Moms, Dads, Judy K, and Carol are not of the hook nor do they want to be.... at least they all got to go on vacations). We have some repairs around the house (drainage issues, lights in front and back so we don't kill ourselves coming home, the dogs need to go to the vet, and the front and back door need to be repaired before Evalyn and the dogs end up outside, Evalyn needs to get to the doctor this week for an updated flu shot, work in the yard, cleaning the house [dusting, vacuuming, etc.]  and help with the leaves).  I would love to have someone plants bulbs this year (my step-mom, Fay, has offered to that but may need some help).
      There are a lot of people that ask if they can bring anything to me at the hospital. Please remember thtll all plants and pots are not allowed on this floor, as much as I love them. Fake flowers and fake potted plants are ok and make it feel a little more homey. Food is always appreciated. I'm not very picky and like to eat a lot of healthy food such as fresh fruit and veggies. Id like some different colored expo makers to decorate my board that is right in front of my face and maybe some large-print short bibles verse to hang up to try and to memorize. I honestly don 't like stuffed animals very much and Evalyn goes to sleep pretty well with the ones she has. She need socks for 12 month an 18 months and cotton play pants in blue, green brown, red and any solid color 18-24 months long sleeve onesies that she can layer under dressess and t shirts. She uses 7th generation diapers (size 4).  Thanks to Courtney letting us borrow Lydia's clothes!! She loves the boots.
       When visiting me, you have to wear a mask again but not the whole get-up, and don't come sick even if you just think its allergies. It could mean a cold that you are fighting off, but I won't be able to. I also need encouragement to get up and walk, whether it's on the floor or they may let me go outside depending on my counts.
      We are grateful for those that have already sent some help with funds, because when Jonathan doesn't work, he doens't get paid. We are trying to work it out where he only takes two days off next week. He is such a wonderful husband, I know he is hurting just as much as me and so is my other close family.
       As for other little things, I like chocolate, wings from locos (the dry rub ones) or a burger, soups from Panera, iTunes gift cards or CD's (you can burn of your own with new music, minus heavy metal or whiney country), more Tom Petty, Led Zeppelin, movie sound tracks needed, kids songs, or anything you find interesting, I can't lose my mind in here, I can't lose my mind. I love new bands. (Jonathan could live off gummy bears and sweet tea so those are some special things for him, hee hee).
       Comfy soft hats with match gloves or scarves are always nice to pair with jammies or jeans. My skin is very sensitive to sun and itchy stuff. Also, I'm asking my friends at the farm and family that are more at risk (such as not being a spring chicken anymore) to not come to the hospital to visit because I do not want you go get sick, same goes for pregnant women if your doctor doesn't want you hanging around sick people.Children under 6 are not allowed up here but Dr. Khoury seemed to think they may make an exception a couple of time for mental health reasons.      
       Daniel and I were suppose to go to a concert for a cool band called  Boombox. Very disappointing. I wanted to go see the new GA theatre and get my groove on. We were also suppose to go to Nashville for a family reunion. Jonathan may still take Evalyn, he doesn't know yet.
       The Be the Match council meeting in November is of utmost concern for me. I want to be a part of that that so bad and hope to still be able to go but it is looking doubtful. We just got in the groove of music class, play dates, yoga, cooking, grocery shopping, etc. Well know my immune system is about to be shot again. Grrrrr.....
               There is a big reason I am here. Please prav that that I will be able to see what God has me here for, besides cancer. I'm already advocacy more with staff about signing up to be donors and there are plenty of people to cheer up with singing and guitar (please pray I don't get mouth an digestive sores this time, that almost killed me with pain) , there are people dying here. Two doors down in fact, they are calling in hospice to set up care at home. Please pray for these families and for these people's souls to make a decision for Christ if they have not. I keep thinking of Paul and all he went through. I'm sure the conditions were horrible and he didn't even have free ice cream or pain medication.There are a lot of cool restaurants down here and i want to taste before my taste buds die again.

Guess that I'll try to lay down again. Oh, I'm on a crap load of steroids again, is this real life?????

Love you and thank you for all your prayers and support.
Heather