Medical update 1/31/12

           I have more interesting things to write about than my medical updates but don't want to until I get the pics uploaded. We had a great time in Helen until Sat night about 3 am. I woke up in the worst bone pain since radiation and was crawling on my hands and knees to get around. My GVHD rash was also very angry and I was coughing my head off. So we went to Emory on a Sun.... blah.... they gave me something for pain and IV steroids. Today, I went back to Emory and felt so weak that I couldn't drive myself, so my sister Anna took me. Dr. Khoury just feels that I have a cold, Jonathan has it too, kept my steroids the same, and started me back on cyclosporine (anti rejection meds). I ask him questions, and he will honestly say ," I don't know with your case." Couldn't I have at least won the lotto with this kind of luck. He just says that we are going to try to keep from relapse again and let the study drug do his job. Cyclosporine is a weird medication.... it gives me dog gas, no kidding. So if you are around me and something stinks, yes it's me. Most of my body looks sun burnt from the rash including my face. My eyes are either watering or dry as hell.  They only good thing about the Cyclosporine is that it makes my eyelashes look amazing.  I'm still trying to exercise and eat well, but still super depressed about the gardening. The up and down of the steroids I think is slowly making me crazy. What I really need is some sleep.

Amazing Eyelashes to come,
Heather

Medical update 1/26

              I pushed the envelope on Wed a little by asking questions with Dr. Khoury's answers being, " no tattoo", "no travel by plane", ha, we have enough frequent flyer miles to go anywhere and the worst news " no gardening till I'm off the steroids for a year."  That was the heartbreaking. I really thought that I would be able to garden this spring and summer. I could be on them forever.  I cried later when I got home. For those that don't know fungi spores are very dangerous and lead to fungal infections, which is very hard to treat and could kill me. I told Jonathan it would be like if he was told he could hear no, see no, or speak no sports for a year, or even for the rest of his life. Gained the few lbs back that I lost, blahhh.
                My cuz Andy made some awesome lamb gyro wraps for lunch before he drove the rest of the way to Emory. We stopped and looked at new tennis shoes and I think I found some that work for me. I really was past due, having the same pair for 5 years. Maybe I'll be able to do the jumping jacks in zumba class.
                It has been a rough few days. We were going back down off the predizone and the GVHD rash  came back bad. So I had to go back up to 30mg of steroids, then it still got worse, so today, I'm on 80mg and we will reduce from there. I thought "well, at least I will get a lot done today", but I didn't, my body was exhausted from being a yo yo and I came home and went to bed. I've also had the irritating tickle cough return but not coughing hard enough to work on my abs.
               Good news is that the meds are still working and they cannot "detect" any leukemia cells. Dr. Khoury just published a paper about the prognosis of cml relapse after BMT. This was before the new oral chemos. So in a few years my info will help determine the outcome of how well these oral chemos help those that have relapsed.
                          I'm excited about this weekend because Jonathan has a surprise mini vacation for us. Funny, before cancer, it would have drove me crazy not knowing what we were doing or where we were going. Now that I have to take life so much slower, it doesn't bother me in the least. My rash is still not better so there is a possibility I will have to go to Emory before we leave, but I hope not. I'm not wishing for snow.
         

Please Donate!!

       Some friends of mine, Greg and Greta, are training for a half marathon marathon in order to raise money for the Leukemia and Lymphoma society, in my honer, along with other people they know that have been through a type of blood cancer. A half marathon!!! They could also use some people to join the team and run with them. Please check out their page at www.tinyurl.com/g2hill. 
      The L&L society has been a great support to us and even built a cancer center here in Athens, where I take free yoga. They give tons of money toward research, awareness, and helping families financially. Please consider donating to them!

Medical update 1/20/12

Hello everyone,
                      I went to Emory on Wed and my 2:30pm appt turned into a 3:45pm appt, then traffic, and I drove myself, so I think I'm just recovering to give updates. My blood work is looking good. He is going to reduce the steroids this weekend and it turns out the the rash was GVHD but the headaches he doesn't know about yet. It's probably the oral chemo since I've had issues with it in the past. I tried to get around the not eating or drinking anything with water for 4 hours, but I didn't win that one. I asked him at what point do we decide I have Chronic GVHD and give up on the steroids and just deal with it. He said I do have Chronic and we can't let it get out of control. I asked if I will be on steroid on and off the rest of my life, and he said " We never know what to expect with you." I am a strange case, he said. He said that it should be a low dose at least. Some how, I lost 3 lbs this week, despite the steroids! I weigh less than my brother now, but I still can't get my rings off. It has been nice not having as much pain, due to the steroids, but I don't sleep well and they can't be good for me. He think I may be able to change to every other week soon but said that he has to keep a good eye on me. I got my FISH blood test back today about the Philadelphia Chromosome, and it was negative. It's not quite as good as a bone marrow test, but less painful. I'm sure I will get one on those soon enough. I forgot to ask about gardening this spring, but I still have some time. I didn't ask about the trip to Ossabaw Island I'm planning in April either, but I'm not going to, I'll be with two nurses (mom and sis) and they can come get me by helicopter, I should at least be able to ride in one of those. Oh yea, I got my third picc line out, and they did it right in the office! It was wild to see this long thing come out of my chest and it didn't even hurt! It will be much easier, and much more likely, for me to take a shower.
              I've been working out at the gym doing Zumba and did a light weightlifting class tonight. Then I'm doing the cancer yoga on Thursday at the hospital and now the lady at the senior center said I could come to their classes for free! Maybe since I'm going through menopause, they think I'm old enough. She asked if I would be comfortable around elderly people, and I told her that she doesn't know where I live! I went to a bridal shower for a 75 year old last week. Yes, I was the youngest there, but not the silliest. When I started working out I almost killed myself because I was trying to do the whole class, but now I'm just doing half the class until I get stronger.
      I got my hair cut today. I'm ill at myself for not taking a before picture because I really looked like a lion. A friend of my secretly paid for my appt before I went. Wasn't that sweet? I also ran into a friend at the store who said that she ordered me a music stand because I had said I needed one when volunteering somewhere. I just can't memorize music anymore. I'm in the process of learning Carol King's "Way Over Yonder". I was also taken out to eat yesterday by a friend and someone blessed us with some money. It's sad that Etta James died today. Reminds me of my first wedding because I sang one of her songs. That was a fun wedding, even ended up in the pool, wedding attire and all. I have a loved one that is trying to quit smoking and he is doing great!
                I'm still having headaches and back pain, but other than that I'm doing really well right now. I even cooked dinner once this week and worked on a friends painting for her baby room. I better get that done while I'm still on the dope, gonna crash soon....

Take Care,
Heather
  

Evalyn's 18 months old!

Here are some videos and pics of Evalyn, on and around her half birthday. Here, here, and here. 

She headed somewhere, even kissed me good bye.

She loves to read with Am-Ma.

Hello?

1 1/2 candles.... we take it day by day here.

All dressed up, even sticky earrings.

                   We are so blessed to have Evalyn. Many days, she is the only reason I have the will to get out of bed, eat, or do anything besides lay there. She is such a  joy to be around and is learning new words and new signs all the time. Today, she said "okra". We have been reading a lot of books and right now she really likes her Sesame Street letter books  that I got for 30 cents each. She is also really liking her dress-up clothes, shoes, and jewelry, but also enjoys an occational romp in the dirt while looking for acorns. She has finally started saying dada when he is around more and will go through a list of word lately in her crib: "MaMa, DaDa, Am-Ma (Grandma), and Nana. Our Nana has gone to heaven and we finally figured that she was saying banana. I guess she is really hungry in the morning. She is doing great with her fork and spoon and even ate cereal with milk this morning! She continues to bark a lot, but we are a dog family. I really think she communicates with them. She has some girl friends that she has been able to play with and one little boy that we know said he was not just going to give her a hug, but that he was going to give her a kiss! We went to '123 Jump' a couple of times and Evalyn seems to be getting the hang of it. Please continue to pray that she grows strong, smart, and stay's safe!

Medical update 1/13

               Wow, that last one was depressing. Hopefully, I didn't turn anyone off... my mom said that maybe she should get out of the kitchen. We found out some news today at Emory. The "booster shots" are not crucial to my continued remission so that is good because I still have Graft vs Host and can't get them anyway. The more sobering news is that this study drug, ponatinib, is the one and only answer at this point for me to live long term, besides a miracle, which I'm told do still happen. I'm very lucky that this is happening now rather than a couple of years ago, otherwise, this med would not be available to me. I started taking it again last night and got sick to my stomach 3 times, so lets hope that was just a fluke. They raise my steriods again, so I'm not hurting as much today, but it's not the going up that stinks, it's the coming back down. I guess I'll enjoy the ride as much as possible. I've already started 3 projects in my mind but know better then to just take them all by the horn. I still have a baby gift to work on and the baby was born in Aug!
              Our weekly bible study group really encouraged me last night. I remember when the cancer progressed in Nov 09 and how at peace I felt and how much I felt that God has a plan and he was going to use me in an incredible way. And he has. After the ups and downs, stem cell transplant, steroids increase, crashes, relapse, a baby,  I think I'm just so tired and God knows this... so maybe I should give myself a break about not doing more and just be prayerful for the times God calls me to speak out or do something.
               In the area of dying, well, I decided all I can do is be ready and that may decrease some anxiety about it such as my wishes, our will, etc.

Don't worry more cute pictures of out daughter coming soon. I know that's why ya'll read this blog.

Love, Heather

Medical update 1/8/12

       


                It's been a while since I wrote, mainly because I've been dealing with a lot of side effects and emotional dealing with everything going on. This was my prayer this week:
   
      Lord, why don't you just take me now
      instead  of me going through so much suffering,
      but not my will but your will be done (I thought that sounded holy)
      Seriously, Lord, this is wack.

                  When I went to Emory last week, Dr. K decided to take me off the oral chemo to rule out Graft vs Host Disease (there is not test for this). If I have any GVHD I can't do the "booster shots", as I call them, with the left over stem cells. Since then, the rash on my face is gone, so I can conclude that it was the side effects of the oral chemo and not GVHD. The other rashes and symptoms are still here and it doesn't take a rocket scientist to figure out that means it most likely GVHD. I just feel like we are starting to run out of options. We may not be at the end yet, but I can see it and it's starting to freak me out a little. It's not that I' m afraid to die, I more afraid of the pain that my friends and family will endure. I'm already on drugs that are not fully approved by the FDA, what's next. I don't know. I was so happy to have my nurse back from maternity leave I forgot to ask what happens if I can't get the booster shots. Oh I'm sure there is something to try, but how far am I willing to push the envelope with all this? I don't know the answer to that either. Some people uproot and spend months at a different hospital, spend life savings, and still do not win. But they did help the world of cancer as a whole as lab rats. Sorry for my pessimistic attitude, I promise that I don't feel like this 24/7, but feel it is important to document that although I have hope and faith, I do not have certainty that I will beat this. I only hope is that it happens sooner than later, I don't want Evalyn to remember losing her mother. Yep, that is super sad to think about. Hey, this is real life, get out of the kitchen if you can't stand the heat.
            The good news is that people continue to amaze me with their kindness and generosity. We had some friends come and clean out house, bring us food, baby sit, people drive me Emory, the list goes on.... I have never had so much faith in others and never thought anyone would do all this for us. It is amazing to see God working through others to show us love and kindness and also to see how some of these people have changed because of my cancer. I guess that is the kind of stuff that keeps us all going.

Love, Heather

Happy New Year!

  Happy to New Year to everyone! I hope you brought in the new year with someone to you care for and woke up feeling great the next day. We went to our favorite restaurant, which we found out was closed forever, and then settle for the next best in Athens. Then we waited for the new year to come in with one eye open. It's been great having Jonathan home more over the holidays, I'm afraid that it spoiled me. Luckily my mom is coming for two days this week, go Grandma. Evalyn said a new word.... once.... "Chloe" ... and that was it. Oh, over the last few weeks she is really practicing her sounds and loves to sing. She has a little bit of a runny nose now, but who doesn't. We were treated with a short visit from Jonathan's sister and family and there was a lot of kissing going on.... you'll see what I mean. I having a lot of side effects but will harp on that more after my appt. at Emory on Wed. Maybe I'll have some answers.

See kisses here..... and more here.

The other two men in my life.

TuTu and Tuffy

going on visit all dressed up!