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, May 3, 2014

Medical update "Who is in charge here?" and other questions

        For those that this blog encourages, educates, or whatever, I'm sorry I have been distant. Just know that sometimes I let the worst get to me.  I think after my last blog and someone contacted me telling me their sister just relapse and I was the only one she could find that is still living this long. And I am the only one right now. Well, I gave them my information to get in touch with me, but I never heard back so I'm not sure if she is still with us. With that, and everything I have been going through and my family and friends have been dealing with, I realized how this blog can either affect people in a positive or negative way. That's a lot of responsibility and I wasn't sure I wanted it anymore. I was suffering terrible depression and a multitude of unanswered questions and lots of pain. I never want to write blog when I'm really down because I want to show everyone how I was able to see the light again. I just kept getting hit over and over again and as soon as I would pop up, like one of those kids punching blow up things (anyone know that the name of those things) and I would feel like writing, I would get knocked down again. (Random memory of my brother and I dancing in the basement to that sone "I get knocked down but I get up again) He was 10 and I was 20. Tangents I am known for....   So I will try to tell you the best I can what has been going on the last 6 months without you feeling sorry for me. I give all the glory to God for me still being alive and trying the thrive. I did lose 15 lbs cause my predizone was down to 5mg. But I was not eating well so I'm afraid a lot of those lbs were muscle. I was not exercising and used the excuse of my pain, lack of vision, and general depression. There is a funny story... I finally was able to fit into one of my thift store night gowns and robe and it was white. You know the kind that is the old worn polyester ones that are so thin and soft. So, I barely nicked my hand and started yelling I'm bleeding and wearing white!!! We told the bleeding had stopped but just like hospitals we make medication errors at home. I was taking twice the amount of aspirin I should have been on and so my blood was thin. I looked down and had blood on my precisous nightgown I could finally wear. I have a lot of short term memory loss but remembered an article I read about stains, very close to my face, and remembered a fifth of the article, the one I needed.... blood. We poared peroxcide on it and it was like Jesus and his angles came down and a miracle occurred... the blood disappeared in front of our eyes. I think I heard harps.
            As much as I have been through, you'd think nothing would bring me to the brink of insanity. I'm serious when I say that a 747 could crash right in front of me and I don't think I would blink. This IV medication, Amikcen (that I spoke about in the Nov 1st blog) has horrible side effects. I felt so much like a zombie for most of the first week, not to mention the new picc line in my arm that causes all kind of issues with showering, doing the IV itself, home health coming in, and skin ripping from tape after tape.. There were days I couldn't bear to even drink anything or get out of bed, feeling like a failer as a mother and wife, and praying so hard for people I care about going through terrible things.They kept changing the dose and the frequency of the dose etc.The IV is very hard on the ears and kidneys. I had a huge freak out scare when I woke up one morning and could not hear out of my right ear. I went two days thinking that I may be going deaf. Lucky for me the IV meds or changes in meds cause an increase in ear wax and completely blocked my ear. I had them cleaned and and omg did it feel good. It was gross but now I know why my pup Wallace loves for Abby to clean his clears. It really should be a spa treatment and next time I was at the doctor, if I were you, I would request to have your ears cleaned. I'm also on a pill for this rare skin infection that caused an up roar in the medication regimen we finally worked out. So I had to change a lot of medications due to contradictions which is a very hard thing to do. We had to figure out how to deal with pain management, staying fungal free, and deal with the clot in my heart. I had not, and still, am not sleeping well do a multitude of things including medication. So that happening at the beginning of winter with the business of the holidays was putting a lot of mental and physical stress on me. The long term use of steroids was really starting to mess with my vision making it harder than ever to write my blog which is truly therapeutic for me. Not being able to see well meant not driving and drove me to more depression because I had to ask for even more help.
        We missed most thankgiving and Christmas dinners due to me not feeling well and out decision to fly out to Texas to see my Aunt and Uncle. It had been able ten years since I had been out there. Evalyn did an amazing job on the plane and we had a great trip. Some family member were upset about us missing family gatherings but I do find it more important to spend time with family during the year and not just at holidays, which we make a point to do. It is difficult when everyone is divorced and you have 5 families to see. So sometimes we are just going to get the hell out of dodge.
         In January, the lump in my leg that was very deep started the slowly rise up to the surface. This was very scary for me . I have been asking for a PET scan for a while because the treatment for my all over body cancer increase the chance of all other cancers and my friends that had [assed on my still be alive if they would have had routine scans to check. I'm so sick of doctors, nurses, scheduling people etc asking me who is in charge of my care. Well , your talking to her. I'm lucky to have the brain cells left to see this and know I have to beg my doctors to work together and to request scans and tests that I feel like I needed being 3 years post BMT. At this point Im over a million dollar baby and it would be great to have a social worker that helped me coordinate my health care while I found rides and sitters. What would happen if I was 80 and didn't have anyone to help. I spend hours and hours on the phone each week trying to make things work the best for getting the appts and the people that I am so fortunate to have helping me. That's when I decided that insurance companies, pharmasutical distributers, and maybe the whole health care system never really wants us to get better. It would cost them too much.
         I finally went to the ER after the pain in my leg was just too much and spent several days in the hospital. I first went to my local hospital but as many times before they look at my file and say, "We are sending you to Emory". Actually I think this time I requested the move because there were already errors being made. But, yes, most of the time they choose to send me to my home hospital, Emory.
    Ambulance rides are not so bad. They are nice people and let me smoke my e cig (we will talk about that later) in there and once stopped cause I had to go potty. They did do an ultrasould of the pulsing lump that had a huge whie had on it and I wanted to stab it, really. The ultasound came bace as being t "tumor like". Geez... Fay, my step mom more big sister, took me to the ER and since I was going by ambulance and had done this so many times before I had her go home and Jonathan bring me some needed items. I had already been through the admitting process which for me takes forever and can be very frustrating do go through over and over. I think im up to 12 diagnosis now, 4 pages of medications, and maybe 8 or 9 doctors, and still need to go see some new ones. So by the time I got picked up, taken to emory,sat my stuff up by myself  that usually my loving husband does and knows right where  I want everything, went through all the same admitting stuff again, it was at least 3 in the morning. My leg starting hurting really bad and I looked down and it was explodinging. The nurse was in the room and I told him and he said he didn't have orders yet to get any samples. Who cares? You don't tell a baby coming out, WAIT we don't havethe orders. So I told him to give me a tube, I sanitized, put gloves on, took the sample myself, labeled the tube and put it on ice. I got an excellent sample which of course they said the next day they couldn't use it due to wrong tube color or not taken according to protocol. Whatever. I hadn't been admitted to the hospital in a while so there had been some staff change and I got to see new friends.
        About that time, my new immune system decided to attact the remaining old one, called Graft Vs Host Disease and it can attack many different parts of your body. I'm so glad it didn't attack my gut this time, I think if I have to be in diapers again I might lose it. Instead it attacted my skin (I have a blog from 2years ago where it did the same thing), my mouth with sores and difficultly swollowing, and my eyes.I have almost choked several times and think I might could have died once at the movie if my aunt had not been there. The GVHD didn't really hit hard until after I left the hospital, so then I was back again. And then again for a "tune up". Where we worked on my medications and I recieved an IV called IVGI which is the combination of 1000 peoples platelets that is suppose to help my immune system and also had to start a once a month breathing treatment that can only be given in a hospital setting and promise to take my inhailer everyday, which I forget sometimes, and my predizone went back up to 20 and in exchange I didn't have to take the horrible drug cyclosporin. It was probably the most heated discussion that my doctor and I have had. My skin is still shedding but almost better. My aunt Susan and Fred were down to see my ailing Granny (more about that later) and gently help me take of at least three layers with many to come. I was like what's his name on Charlie brown that has all the dirt around him. I couldn't go anywhere, sitting or walking, withouth the need to vaccum up huge peices of skin. Due to the picc line for the IV, I had home health coming in once a week and had the most wondeful nurse, Carmen. She loved Evalyn and Evalyn loved seeing her work and her little girl and Evalyn would exchange pictures. So now with everything else I was expected to mostrise daily and add i dropped to the list. The mouth sores have been horrible. I'm still dealing with these and can not wear my new beautiful dentures. Anything even a little spice will set me on fire and I consumed a great deal of chocolate because that was one of the only things I could taste.The medicationwas like pouring whiskey over an open wound. When I finally said enough, they started to get better and continue to do so, very slowly. I know two different languages now, one with or without teeth. The latter I have to learn again.I kid with people when they give me the "you poor thing" look and says hey.. I got a fake hip, fake spine, fake teeth, and another persons marrow, I'm going to be a bionic women and out live everyone!! That always lightens the mood. My skin was so sensitive that even clothing or even some natural items would burn my skin to the point I would have to run to the nearest hydrocodone bottle. I learned quickly about doing a test spot. My eyes, well they continued to get worse, but I would have good days and bad days. My right hip, both knees, back, and right wrist were all showing signs something wrong. I had a fall, that I risked myself while trying to train my grandparents dog. I ended up with a mild concusion and scans all over my body. So the fall was worth it because I got scans and know I don't have a tumor in my brain or somewhere else.
        Right after my Granny passed away (tell ya more later), Evalyn and I already had reservations at the hotel in the forest, my home away from home. This was the third attempt to go to the hostel since Nov. Since we were waiting to have her service for another week and a half, Evalyn and I took off on the best mother/daughter trip ever, our first, and will tell you more in the next blog. We got into a wreak on the way home and the air bag hitting my face didn't help my eyes. Everyone was ok, I got the the ticket of course.
          Right now, I'm trying to get it together. I saw the eye doc and they have added cateractes to my diagnosis list and I now have eye drops four times a day, lowered the steroids to 15, found out that my bones in my knees and right hip are doing ok for now but I have tendinitis and burcited and they have ordered exstensive PT at home to build up the muscles that have weakened so much.I'm very thankful cause I was already trying to figure out how and when these surgery would occur. Next week I'm getting my spine and neck checked out. After that my wrist and bone density and vitimin D shots, and the very slow dosage reduction of steroids. Please pray for these things and for God will in my life. I'm trying to seek him more and more and even when I feel that I can't hear him or he is not there it's people like you that help my faith even on the darkest days. Always try to look for God in the smallest places and in every smile someone gives you. I do prefer the neon signs though.

GVHD of skin... I was molting like a lizard.

Just some of what they got out of my ear.