Don't stare at the Beam

               It was an overwhelming two days at Emory to start getting ready for the bone marrow transplant (BMT). All in all, everyone was very nice and on time which was great since it was pretty stressful. My mom came with me and we met with radiation, had an EKG, Echo, CT scan of head and chest, discussed a clinical trail I going to be a part of, met with the transplant coordinator, social worker, labs, and a bone marrow biopsey. Whew!
       I will be admitted on March 23rd and have the transplant a week later. The day before, I have to have a different picc line put in, one will 3 tassels instead of two.  Radiation sound horrible and they pretty much tell you at the amount they have to give my whole body, I will have an increased risk of EVERYTHING for the rest of my life.They also said that I will never be a runner. I was worried about that, ha ha. Good thing I hate to run.  I will have it twice a day for 3 days for an hour at a time. At least they will play any music I want while I'm in there. As far as side effects that first couple weeks, I will probably have some skin discomfort and be sick at my stomach. I will also have chemotherapy before the transplant. They said that the first week after the transplant, I will feel my worst, and may have mouth sores and be pretty sick. This is not my idea of the best way to spend the first week of spring but I may be able to wear my small jeans again.
           The CT machine is pretty wild. It reminds me of Star Gate. Not a very good movie in my opinion but my father feels differently. When you are in the machine, you look up and there is a sign under the beam, that says "Do not look at the beam." Well too late, you should have said something before I started looking around. I almost fell asleep on the strecher when I was getting my ECHO. I must have been very tired because some women rubbing a cold thing that has Lub on it, would usually make me a little uncomfortable. Maybe I've just been through so much, nothing is surprising anymore.
          We found out the my perfect match is now "unavailable". It's pretty disappointing but Dr. Khoury and the team felt that a 9.5 out of 10 was still great. I'm not sure what that means for my chances of survivals and I'd rather not get into the statistics of things... it's too scary. The team talked to me about a new drug they want to give me to reduce the risk of Graft Verses Host Disease. I will be the fifth out of ten people they want to use this drug on at Emory for non related donor BMT. So far they feel that the the results have been good. They have used this drug for other types of transplants such as kidney.
             My mom and I spent the night with my aunt Sheri and uncle Toni since they live pretty close. I was able to meet my cousins baby, Ethen, for the first time. What a cutie. Bella, her 3, excuse, me 3 and a HALF year old daughter is a hoot. She asked so many questions that I started asking one for every one that she asked me. She told me that after college she was going to get married when she was 22. I asked her what she was going to major in and then rephrased it, what do you what to be when you grow up. She said a princess. I asked her how much that pays, and she said five. Later, when she realized I didn't have any hair, she told me that when my hair grows back, I could be a princess too. Guess they don't make princess dolls that have cancer :). She brushed my pretend hair for me and I showed her pictures of when I dyed my hair blue. Then she kept asking when did I die and when was I going to die. I finally realized she was confused with the word dye and die.... easy to do. Before, we went to bed, I asked her how many children she was going to have and she said five. She loves little Evalyn Rose and said that she wants to see her soon.
            The next day we went back to Emory.  Oh man, the pschosocial assessment that the social worker had to do was painful. They ask questions to see if you have any needs before the BMT, basically to see if you are psyco. Questions such as " How did you feel when you were first diagnosis?" Seriously? Hmmm.... I felt just swell thank you. Like all this must be happening for a reason and God is in control and I'm just going to be fine. BS, Give me a break, really, was she trying to make me start crying in front of my mother, which I hate to do because then she is going to start crying and then they will try to put me on drugs. So, I gave the general response of anger, sad, confused, yada, yada, lets get out of here. Then there was "How are you coping on a day to day basis." Really? Well, I get out of bed each day and try to go about things normally because life still goes on.... take your medicine, change and feed the baby, let the dogs out, etc. I gave the sane response of  "my faith and support of friends." Some how on a yes or no question and she would type three sentences. I have to get a copy of that thing. Hey, I'm a social worker and have had to put others through awful assessments myself, so I can complain if I want to, it's not her fault.
               Labs and the bone marrow biopsy went by pretty quick and we ended up getting out early. This lady, Jessica, in the clinic, does a great job. It was the least painful biopsy that I have had so far. I'm really sore today but it wasn't a horrible experience. I forgot to ask them exactly what they are looking for in this biopsy. I believe that I have to be in remission in order to get the transplant and that is what they are checking for. I'm in the process of scheduling baby sitters and getting a grip on the idea that I will be away for so long. I can't say that I'm not scared that I might not come back, but I'm sure everyone feels that way when they have to go in the hospital for something major.

Who's driving here?

      

Wallace, " Hello????"

        We have had a wonderful week. The weather has been great, we are all healthy (besides the obvious), and we are together instead of me being at Emory for the past 5 days as planned. Corynne was able to spend the night and we had a great time. Check out her art link. She is very talented and hopes to get a scholarship to an art school.  Evalyn has been in a great mood and we have enjoyed watching her do new things like rolling over an over and smacking her lips. She has also learned to wear her sunglasses on walks without pulling them off! It is amazing when I look back over her pictures how much she has grown.  She is so cute. My voice seems to be back for the most part and it has been fun singing to her again. She LOVES it when I play her the guitar. I hope she wants to learn guitar and we can sing with each other one day.

         I was watching Evalyn yesterday try to put her teether and sippy cup in her mouth at the same time. It made me think about how I try to keep my worries and fears and also trust and have faith in God's plan. I guess you can really do both at the same time. So right now, I'm picking up one, putting it down, then picking up the other and back and forth. I'm sure that once I get in the hospital and I'm stuck, there will be a spiritual growth spurt for me, there was the last time.

These were my clothes as a baby. 

         Someone sent me a link about a guy named Zac Smith, that had cancer who said that " God is still God and he is still good no matter what happens." I agree with that.... Then after he died of cancer, his wife was talking about Jer 29:11, it's on the right side of this page, and that they still have hope and know that God has a plan. I agree with that too....  I guess what I struggle with is if I die of this, why would that be God's plan? Why would he want Evalyn to grow up without a Mommy and Jonathan lose his wife. Why? Oh, I'm sure that God has already used my situation to touch others, I've seen it. I obviously have a long way to go to completely trusting in God no matter what happens. Right now, just the thought of the statistics of not making it, well, makes me angry. Not that I'm afraid of dying because I'm not really. I'm more afraid of watching people watch me die and the pain they would go through.
          Now don't go thinking that I think about dying all the time, I don't. It come and goes when you have an illness like this. I'm not really one of those people that are going to walk around saying "God's going to heal me 100%" because no one can say that. But I can say that I believe that he has a plan, whatever it is, and I'm a part of that plan. Some people can choose to walk in God's plan and some get thrown in whether they like it or not. As Zac Smith said in his video, "To God be the Glory."

Feb. 16th Happy 7 months Evalyn..... Hello BMT!

On her new puzzle mat!

"Yea guys, we hope none of our players get arrested this year...."

        

         Evalyn is 7 months old today! She has been so happy this week and has starting doing something super cute. She will say "ahhh" and then lean into your chest, arm, leg, whatever is close, and hug while she is shaking her head and getting drool all over you. It's nice out today and we went to the park to try the swing for the first time. I thought that she would laugh with joy, but she didn't really seem that interested. Daddy and Evalyn slide down the slides and then we went to see the dogs at the dog park. She thought that was more fun but said they didn't hold a paw to our Chloe and Wallace. I guess she is still to young for the park... but she loves to eat, that is for sure. At the farm's Valentine's Party she had a blast in Mr. Franks arms eating potatoes and carrots, I'm pretty sure that he gave her something with cheese in it too.

So sweet!

MEDICAL MJ: I received a call from Dr. Khoury himself, talk about a lump in my throat, and he informed me that we were not doing to do this next round of chemo that was schedule to start Friday. Instead, we are going to go ahead and move toward the bone marrow transplant. Holy Cow! He also said that he wanted to talk to me about a clinical trail, not sure what that means yet. The next day, I got a call from my transplant coordinator, Rachael, who said that they are looking at me being admitted on March 16th and the transplant being on the 22nd. This is tentative, of course,because they have to schedule the harvesting with the donor, which she told me was a young person that lives in another country... crazy. I hope one of us has some money in a year to be able to pay to meet up. In the meantime, I have to do a slew of tests and meetings with different parts of the hospital. I'm going the 24th and 25th of this month and will have tests done all day both days. These include a CAT, Echo, EKG, bone marrow biopsy (ouch), LP, lung tests, and many more. Before, the transplant, I also have to get my double lume picc line changed to a triple. I have to meet with social workers, the radiation team, and I forget who else.
             Scheduling a month of sitters, knowing that I will not hardly see Evalyn is killer. Not that I have to have complete control but that is a long time! Jonathan and I have worked really hard for her to go to sleep on her own, entertain herself for a while, teaching her signs and stuff like keeping her hand down while eating. You all might think I'm crazy but with 6 plus people taking care of her, I literally have directions written out to keep everyone on the same page. So far, it seems to have helped. Children under six are not allowed on the floors I stay on so we have to meet down in the lobby or outside. I don't like her to come there very much because hospitals are germy and sometimes it is harder to see her and go back to my room than not see her. Sad, but true.
            The scariest part of all of this is how it is going to work once I get out of the hospital. I don't know how I will feel or how much energy I will have. My mom is going to take a few weeks off of work but won't be able to stay past that. I will then I many follow up appointments where I will need rides and sitters, which this is not new, it will just be more intense. Jonathan will be in the mist of studying for finals and will graduate in May. If all goes well, he will start a job soon after and I will need even more help. I'm just hoping and praying that I recover very quickly, that my sitters continue to be able to provide consistent care, and I continue to have support that is willing to go the long haul, cause it's going to be long.

boring.....

On a ride this week around the lake. 

Feb. 11th Snot, Blood, and other Gross Stuff

                    It has been a good and very interesting week. Between Evalyn snotting and drooling all over the place, Jonathan coughing, and me running to the bathroom sick to my stomach for 3 days, all we can really do is laugh and hope that life gets better real soon! I'm sitting here now at Athens Regional, getting a blood transfusion. Not my idea of  a good Friday, but hey, maybe it will give me some energy. I also caught a touch of the cold that they had and I'm not sleeping so well. It's really odd going back and forth to the hospital like I do. It's like I lead a double life. Good news, three of the staff here at Athens Regional where I get transfused, signed up for Be the Match since last time I was here!
                    Evalyn seems to be feeling better. She is eating and sleeping well and has A LOT to say. She finally rolled back over on her own this week although she can't do it every time she wants. Yesterday, she starting kissing me when I asked her too. She opens her mouth and leans into me with her eyes looking to the side. She is also trying to sing when I start to see her a song. She really likes "Splish Splash" and "Your my little Pin up Girl". Evalyn wants to read to a lot and is really enjoying her colors, shapes, and numbers book. She will even pick one out when I hold two up! Well, everyone thinks thier kid is a genius, right?
                 Jonathan has a job interview coming up with a great company and everything about it sounds just perfect for our family. Please pray that he will do well at the interview and that they will choose him! Scoring a job soon would be one less worry for us during the next very stressful few months.
                 Everyone is asking, when is the BMT going to be. I'm not really sure, but I think it is going to be in April sometime. I will be at Emory for about 30 days depending on how I'm doing. We are hoping that this next round of chemo, starting Feb. 18th, will be my last until the BMT. I can tell my body is getting very worn down from all the anti- everything medication and the chemo. Continue to pray that God protects the healthy parts of my body and I have strength for each day. I also have not mentioned this one, but my singing voice has been messed up for about a month now. I really need my voice to be healed so that when I sing, I don't cringe . For someone who loves to sing, this is really hard to go through. I'm really hoping that it goes away soon.
            I'm so exited for the semi- warm weather coming up this week! I can't wait to get outside some!

Don’t make a move or I’ll eat this Duck

Hello,

          Today is my oldest step-daughters, Shannen Gamboa’s 19^th birthday! If you don’t understand, well you have missed something and will just have to go back and figure it out. She used to always think that it rained on her birthday and truthfully for about 4 years I think it did. Now I control the weather for her and it has not rained on her birthday in 3 years. I didn’t get to see her today but she seemed to have a good day going out to eat and I suspect seeing her boyfriend (her relationship status has changed on her facebook). If you would like to say a prayer for her please pray that she grows strong in the Lord, seeks him, makes wise choices, and stays safe. I love her dearly, and remember that although being a teenager was hard, it was nothing compared to young adulthood.

Shorty after Shannen and I met, on a trip with White Elementary 

 The days since my 5^th discharge have been interesting. We have all been sick. Due to God’s grace, I have not ran a fever and why I’m still here and not back at the hospital. My mom stayed an extra day and I stayed over my Grandparents for two nights hoping to not catch it. A sick child is one of the saddest things in the world. If they could just blow their nose and take some Dayquil it would be a lot better. Right now, they don’t recommend giving anything besides some Tylenol or Ibuprofen.  Wiping a child’s nose has to be one of the downsides of parenting. It’s like you are about to torture them when you reach for a tissue or a wash cloth. They get that look on their face and some move their head faster than your hands forcing you to hold their head in place. Then, after you remove the snot they look at you like you are the worst person on the planet, and sometimes makes a pathetic “ehhh” sound. Then their face is all red until the next snot bubble emerges. Let’s not even talk about the sucker.

            Besides not feeling well and the usual weakness from having poison run through my body, I have been having some ok days. Not sure if I really let everyone knows but I quit taking the anti depressant about three weeks ago. They just were not working for me and I felt worse, not better. I didn’t blog about it because I wanted to make sure I didn’t screw up and go off the deep end. Messing with medication is a scary thing. I of course called the nurse at GA cancer discussed about why I thought I needed to stop the medication and she instructed me how to wean myself off of it. So take note, Heather didn’t say for you to just stop taking your medication. J Don’t get any bright ideas. So, for me, the medication took my “fight” or motivation away. I didn’t feel way down, but never felt up either, I just felt blah and feeling blah all the time made me want to give up. I’d rather have the highs and lows and get pissed off every now and then, then not care.

              The reality of all this still gets me down and makes me angry. There is so much that I can’t do places I can’t go, and people that I can’t see. I missed our cousin’s shower this weekend; I’m missing two different parties as I write this. A couple weeks after my counts go up again, I can do more, but I still have to wear a mask if I’m around a lot of people. I have no desire to put on real clothes, make up, or sometimes to even wipe the sleep out of my eyes. I generally look like crap. I’m ok with that most of the time because usually I feel better than I look; it’s a sick form of control. Makeup is pointless because my eyelashes and eyebrows are mostly gone and my skin is so sensitive to everything. Wearing a wig around the house would be a joke, and with a 6 month old, give me a break. I got a strange compliment last week at the dentist office, " you look better than most people on chemo." AKA, "you look like crap but not crap that has been ran over." I’m probably going to seriously need a makeover when I rejoin the land of the living. Your body changes after you have a baby and let just say that my wardrobe never had time to change.  I talked to Jonathan about the subject this week. I hope that he was telling the truth when he said that it didn’t matter to him if I was in my PJ’s with no makeup on when he got home. There is the once every 3 weeks that we try to go somewhere together, that  I will try to look half way decent, but then there is that pesky mask that just doesn’t go with the outfit.

another cute clothing item never worn outside the house

               Jonathan’s sister was able to come visit us on Friday and pick up a lot of baby items that Evalyn has outgrown. She is 6 months pregnant and has not been eating for two. She looks great. Thank god people come visit us sometimes, at least then it’s not like I’m totally isolated. Also, thank goodness for online shopping. I’m not sure why it is so satisfying and it’s a good thing they price compare.

           Tomorrow, I go to get my blood checked and get a small bag of chemo called vincristine . It’s the one they found in Madagascar.  I’m going to drive myself like a big girl and maybe put on some jeans. No, I’m not wearing lipstick under my mask, forget it. 

Jonathan's parents came to visit and work on the house while I was in the hospital :)

Feb 1st Visitors, Pansies, and the Earthquake

Hello,

                 I wanted to give you all an update about this weekends stay. The LP’s went fine, chemo was as good as it could be, had a lot of great visitors, and I intend to go home tomorrow morning. My lucky cousin, Andy, is going to make the trip once more to take me home. We hope that I feel well enough to go out to eat because I really want to do something normal before my blood counts crash. I been craving vegan chocolate cake and fried tofu from the Grit in Athens for about 3 months now. That’s a long time.

               I always forget to take pictures of some of my visitors so sorry I didn’t get everyone. My sister, Jen, and her friend Sadie came and brought me Doc Cheys and we had some girl talk. My mom came, of course, and brought some needed things and help hold the tray for the last LP. I volunteered to be interviewed by a first year PA student named Dan, and had a very through exam and medical history. I think I helped him out, but I was wore out. I told Michael, his PA mentor, that he owes me an early LP next time I want to get out of here. Our friends, Chris and Stephanie came and brought some lunch and we had a good time talking. Chris was talking about his usual favorite subject. J They just got back from a vacation in Mexico, oh the beach, I need you. Michael Chambers and his daughter Ashley came to see me. They attend my parents church and this was the first time that we have met. Michael wants to do some videos to promote be the match. Then my friend Cristian came to see me. Since I saw him last month, he has been to Chile and Europe. I’m having some wanderlust here and it ‘s going to get worse before it gets better, or I will not want to go anywhere in fear of leaving my temperpedic bed and breathing strangers air. They probably make a medication for that that they will try to give me. Ha ha  My friend Tasha and her two children came to see me today. Elise and Emily seem to like the red wig the best. They are so sweet and pray for us all the time. Tasha said that her son Jack prays more for Jonathan, for him to know what Evalyn needs. The girls are so happy that God answered their prayers about the donor. It is amazing when parents teach their children to pray, and pray with them. :) 

               I was able to get outside some this weekend. I even had someone ask me for directions like I went to school there. It's the little things.  It was so nice outside and I thought that Mr. Jim was probably fishing and thinking about me too. I was just getting good at cleaning fish: Jonathan might have to learn! Soon I will need some volunteers to come plant some pansies in the shade garden when they go on sale. I can direct but I can’t do anything in the yard for more than a year. I’m thinking about submitting an application for Extreme home makeover, maybe they will do my garden also. 

            I read one of the best books this weekend. My sister and brother in law gave it to me for Christmas. It’s called Unshaken: Rising from the Ruins of Haiti's Hotel Montana by Dan Wolley    I have a deep connection with Haiti due to the two mission trips I was able to go on. I know that some of the people that God used me to lead to Christ probably didn’t make it out of the Earthquake alive. This was a great book for me to read.  I really enjoyed how he sought the Lord throughout his entrapment, the book had some flash backs of other life changing events, and that he and so many people were changed for the better. It gives me even more hope that I can come out of this stronger and a better person. But man, I still can’t write about everything that will go on the next few months to even a year. It’s way to overwhelming. I need to just think of getting home to my family, keeping my job, and getting though the next week. I’m trying to worry about it, but it’s hard. What’s that verse about today has enough???

Jonathan is not feeling too well, please pray that he gets better soon.

They did a newspaper article in my home town on me finding a match, and it came out today. You can read it here!