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
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.
Oh Heather let it out girl.
ReplyDeleteYou are in my every day, throughout the day thoughts and prayers. It sucks and it is what it is. You titled this blog real life a great story, and it is. It is a story of love, strength, weakness, and victory. One of battles in the war, scars and wounds and healing and hope. I know you don't tell all the bad bits, we can't, yet. But we know what they are are more importantly those closest especially our creator knows and doesn't leave us.
I too hate the weakness, the weird itchy oval purple blood blotches, weird skin growths that fall off and then grow back, depression, bone and joint pain, weird hair growth especially around the eyes, the bloating, weight gain, fatigue, painful stretching of skin, complaining about it, headaches, GI issues, not being allowed to do it all-like we used to, having to abstain from nature and things we love. Every day we MUST remember this IS NOT forever. It is temporal. We can do it, we have fought this b!tch ALL Ph+ before and this time we need God to finish her off for good. I believe in you and I believe you have more living to do and better times are ahead. That doesn't change what is today, but miracles are all around you.
Thank you Jill, I love how your wrote this!
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