WELCOME

Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!

Please read, comment, enjoy, learn, grow, LOVE LIFE.

Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.

Saturday, October 29, 2011

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 4th one I could get pretty easy because it has already been approved by the FDA but Dr. Khoury wanted me to try the 5th one that is in clinical trials because I can always go back and try the 4th 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.

video

Sunday, October 23, 2011

This is your brain on drugs.

               Those last two rounds of chemo, in the hospital, seriously fried my brain. Dr. K said that I only get those rounds once and I can see why. My little neurons are trying either  to come back to life or jolt themselves out of suspension. I rarely know the day most of the time let alone the date.

                This time last year, I was hiking with my family (Mom, Dad, Daniel, Jonathan and Evalyn) at Cloudland Canyon. I had terrible bone pain in my shoulder that seemed like it was moving to my jaw. I took it as side effects to the oral chemo I was on. We made it 5 miles with a baby in tow and Daniel racing towards lunch. As the week progressed, my pain increased. I remember calling my boss and telling her I couldn’t work the rest of the week, calling my mom and telling her to get here now, and telling Jonathan that I felt like I was dying. We went to the doctor and the oral medication weren't just quite working so he put me on something else. On Halloween weekend, Corynne came with me to carve pumpkins at our neighborhood's fall party. Later that night, Jonathan was Joseph, I was Mary, and Evalyn was baby Jesus. We won the costume contest. Heck, how can you say no to baby Jesus?
                The next day I was at the doctor in Athens and they sent me via Ambulance to Emory. My Pop wanted to take me but they said my platelets were so low I could bleed to death if we got in a wreck. Well, the rest of the story is in the blogs…..
             Leaving the hospital on Wednesday was great. I had a good day on Thursday due to my mom helping out and getting to go cancer yoga… man that was some hard yoga. I had to wear a mask but it felt so good to do something. Then I had to go to Athens Regional to get Platelets. YEAAA. I did get to meet a lot of people and tell them about the Lord and about be the match. Hey, this is cool, they were having GA Football day at the hospital and I got to shake Mark Richt's (the coach) hand. He told me that he hopes I get to feeling better, I said me too. I was hoping to get signatures of some of the guys on the team but they were done before I was done with the infusion.
               I have been sick on my stomach since Friday and, no lie, have lied in bed for most of 3 days. I go back to Georgia Cancer in Athens tomorrow and to Emory on Wednesday. If they have the new oral chemo there I will start taking it. These side effects are killing me. I have to ask myself quite a bit if it is worth it, I know that it is to the people that care about me . 
              Mom took Evalyn for a few days and it’s a good thing with me being sick and all. Please pray that the stomach sickness and the fatigue go away.

Wednesday, October 19, 2011

Time Flies when your having......

                   Fun? I'm sure that is very true, but it also floes when your drugged up or just sleep all day. I didn't even get my computer out at the hospital. I was in a weired state of " just let me sleep or die". They did every test in the world and could not figure our what caused the fevers. They know what I don't have. I'm still really bummed that I have that mutation, I'm mean I already had 2, the last one is the the bummer. I'm trying to keep my chin up, just going though the stages again I guess. One thing is for sure is God has allow people far and wide to continue to bless. Evalyn will not run naked, my head will not be cold, Jonathan will not die of low loses of gummie bears. :)
              I'm missing small group tonight and probably yoga this week, I want to try and start back on thing next week, but getting down the hallway without wanting to go back to sleep. Sleeping with Wallace.......well it's heaven. Sleeping on my temperpedic with Wallace... I could tell you because it would cause you to sin with  envy. Soon I hope to have enough energy to blog more and do more of everything. I've lost my charger to my phone for the moment and about 6 more things. I would say that I feel about 70 today. I compared my systems to my poppa when he came by so we decided to up it to 80 years old.
            Keep Jonathan in your prayers, he has such a tremendous weight on him and he is doing a great job. I love you hubby!

Saturday, October 15, 2011

FYI

Heather is back at Emory. My mother brought her home yesterday morning, and then I had to bring her back here last night.  Her fever got to 104, and she was in some serious pain... so it was time to come back.

She is finally getting some sleep, and is on antibiotics and occasional painkillers.  Hopefully this is just a small infection that they can get under control, and maybe she can come home again in a few days.

She, or I, will blog more at some point. Until then... please keep praying, and thanks for everything you all do.

-Jonathan Cape

Thursday, October 13, 2011

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.

Tuesday, October 11, 2011

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 28th 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!

Sunday, October 9, 2011

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

Friday, October 7, 2011

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

Wednesday, October 5, 2011

Just when My pill box was looking Drab.

             
      Yea, be positive, keep your chin up, God is in control, but that is not how I feel right now, and neither would you. Not that I don't appreciate your kind words and that you care :) Pretty much knew yesterday when I decided to go have some labs drawn here in Athens that the cancer was back. It was great to see my friends at GA Cancer and have then see Evalyn. They confirmed that today at Emory. Thankfully my husband was able to get off work to watch Evalyn, my brother Daniel took me part of the way to Emory and we met up with Andy, my cousin, then we met my sister at the appointment who took my scrips to the pharmacy, then Andy met back up with Daniel to take me home. Whew! Takes a village to raise a child, my ass, it takes my whole family to get me to the doc and watch the baby. I had some more labs completed at Emory today. One of the labs will indicate if I have a certain genetic mutation where the oral chemo will not be of assistance. The next step after that is getting more donor cells and doing something like a "booster" one time a month, and then there are clinical trails, more chemo, more transplants, more meds, so at least I'm not backed into the wall. There are options. I'm sure someone at Emory today was told that they can't do anything else for them and they have such and such to live. I was not given a prognosis, however, because basically I'm a lab rat and on the breaking ground of new science. They can't give me what hasn't had enough people my age with ALL plus PH positve, post transplant, now relapsed, female that I am. I cried some in the doctors office when I told Dr. Khoury I was scared. He is such a wonderful doctor, I'm so lucky to have him and the other compassionate staff at Emory. He said that this may be lap one of six and to strap on my seatbelt. Is this a Lebanese saying, I'll have to ask him. I stopped one med, reduced one, and added 4 new ones in one day. You don't even want to know the side effects, but one of them, Sprycel (oral chemo), I had a lot of trouble with when I was on it pre-transplant. I didn't ask a lot of questions that I could have today.... it was just all overwhelming.... and I try to keep some composer for the people around me.  Why? I have no idea.
           On Friday, I will have more labs completed and a possible LP to test my spinal fluid to make sure that the cancer has not spread to my spinal cord and brain, which is one of the favorite places for leukemia cells to hide. I'm not sure what all this means right now in relationship to how my life is right now. Do I have to resort back to rules I had 6 months ago? I'm scared to ask. I was just feeling like I was getting in the flow of my "new normal", nothing will ever be "normal" again. But my new normal consists of me exercising by going to dance, yoga class, walking, all without a mask, volunteering with kids music 1x per month, sleeping with my  dog, taking care of my little girl, Evalyn going to play dates, me helping to take care of my grandparents more, cooking more, cleaning more.....you get the idea. I will know more details over the next week or so, in the mean time, I'm just going to try and go about in the "newest normal" I know and pray that I have the strength to so do. God have mercy.

Tuesday, October 4, 2011

URGENT Prayers needed: Medical update

Just when I was thinking I wouldn't be going to Emory till the end of Oct...

Please pray for me and my family right now as we are all pretty stressed about the unknown and the known. I didn't feel quite right and had some odd bruising going on so I had labs done in Athens today and sent to Emory. They did not come back normal and I'm not sure what that means at this point but I  have to go to Emory tomorrow for labs and to see Dr. Khoury. I'm pretty scared to say the least. My white blood count is high and my platelets are very low. Is the cancer back? Is it because we lowered the anti- rejection meds? Unfortunally, my nurse, Stacie, is on maternity leave, starting 3 days ago, and will be for the next three month. Apparently her load is being assisted by 5 other nurses, so today I requested that I be assigned 1 nurse. I guess tomorrow I will have to assert my Emory VIP status :). Besides being afraid of what this means we have all kinds of issues with getting there, do I go alone?, who is going to what Evalyn. It would be that this would happen the week that all 3 grandma's are on vacation or just got back, best friend on Honeymoon, Pop and Dad busy with their own medical tests, and when Jonathan takes off work he doesn't get paid (not really important at this sec in my life). God is in control right? I guess this is where I can choose not to freak out and trust.