Medical and family update 9/28 Hot as Hell

Not sure if the HRT is not working or if I'm slowly succumbing to the depths of menopause and need another blood test so see how far I have slipped. I was so hot today that I almost threw up today and had to take anti nausea medication. This really irritates me, this is not suppose to be happening right now at this time in my life. I do have more energy since starting the HRT but the medication that makes me feel better is expensive and we are trying to figure that out now. Oh yea, I need a massage too, not sure how I'm going to manage that one right now, but there has to be a way to get it covered or at least a copay. I also feel that I'm on edge, I just feel ill.

Jonathan has had some interviews that we are waiting to hear about. Please pray that the Lord leads us to do what is right for our family and in line with his will. Evalyn is starting a day care tomorrow. It's one of those drop off ones that doesn't have to have an appointment. It will be great for last minute sitter cancellations and doctors appointments. This is a big move for her and us. Please pray for her health and my health. Anything she gets could potential be a huge deal for me. They are interested in me playing some music there and we may be able to exchange some music time for sitting time, which would be great!!

Be the Match Race and Fundraiser!!

On our way to Atlanta, this girl loves hotels. 

My brother Scott, me, and the Rabel family. 

My brother Daniel did excellent on 3 hours of sleep.  Kids.....

The Khoury's and Danielle.

What's up Doc? Dr. Khoury finished first for our team.

Scott did a great job walking with us and meeting new people. 

The runners....

Funny... Daniel said, where's Jennifer, and he had his arm around her, hee hee.

So thankful to be keeping up with my cousins!

         
 The Be the Match Race and Fundraiser was a huge success with over $60,000 being raised! This money will go to research, helping families with medical costs, donation costs, awareness, etc. Our team, "Run those stem cells out!!" raised the most money out of all the teams and Judi Rabel was the top fundraiser and Danielle Rabel was the fourth!! Way to go team!! We had 8 people complete the 5K and the rest of us thought we missed the 1K turn off but it was actually a little over a mile.  I think we only had one person throw up.... a few felt like it. It was great to see all the people out there, all the survivors, the donors, the volunteers. Be the Match let us use an extra hotel room the night before. It was such a blessing to be right there in Atlantic Station so early in the morning, with Evalyn, and with singing the national anthem. Everyone said that I did a great job, and to tell you the truth, I surprised myself. The Lord helped me through the song because I was coughing all week and was scared to death I was not going to be able to do it. My sister was the alternate singer, she just didn't know it. :) My brother, Scott, walked with me and he did an amazing job, we even ran the last 10 feet. I had a short interview and will hopefully find out soon when it will air. It was so great to have my family, some friends, two of my cousins, and my wonderful physician participate in this event. Some how I missed getting a picture of my brother and sister in law. Sorry ! Next year, maybe I will run, hmmm maybe I'll walk the 5K. After the run, Danielle's dad treated us to West Egg where they have the best pumpkin pancakes, ever! Here is the video of me singing the National Anthem.

In conclusion, I want to go to a Horse Race

            So much has happened this week that I don't even know where to begin and I'm having trouble organizing my thought. Should I do separate blogs, lump them together, etc. Well, I guess it's just important to get it out. Here we go...

              We will start will Medical Updates. My appointment at Emory went great. Of course hearing that everything I'm feeling and going through is completly normal at this stage- feeling fat and tired, is comforting at a certain point, there is really not much they can do about it. They reduced one of my medications, the anti rejection med, to every other day. I think it's the one giving me curly arm hair. Gross. In one week, I start the oral chemo again, not excited. At this point, they say that I will be on that medication for the rest of my life, that research shows BMT's are more successful to be on the oral chemo after the transplant to reduce the risk of relapse. I'm still very tired and have had a lot of swelling in my ankles again. Sleeping isn't going so well and when I am sleeping, I'm snoring and having crazy dreams. I yelled out "Hurry" the other day, Jonathan said. Wonder what that was about.

Our friend Peggy, we will miss you!

                 Mental Health wise, there has been some depression due to the passing of dear friend and neighbor, Peggy. She already had some underlining health issues but what made her sick this last time was a virus that effects mostly infants, the elderly, and immune surpressant people. I'm not even sure if I can go to the funeral. Then, my friend that had her BMT shortly after me and has not been able to speak for a few months, found out the she has leukemia cells in her lymnodes in her neck and will start chemo again the 26th of this month. They are not sure if it related to the transplant or something else. She is also getting a port put in and only recently got her PICC line out. Grrrr..... She has such a positive attituede.  Please keep her in your prayers. Then of course, there is the flu and cold season coming up and with things mentioned above happening, I'm feeling a little parinoid, or maybe it's smart to feel that way. I think I let my guard down a lot because I'm doing so well, but man, if someone sneezes on me, I might freak out. I'm seriously afraid that if I had to spend a segnificant time in the hospital again, I don'tk know if my psych would stay intake again. Just the thought of being in isolation like that makes my heart race. Heck, I don't even have to think about it, I can just hear some hospital equimpment. Jonathan seems to be over what ever he had and Evalyn's gums seem to be feeling a lot better now. That teething is some rough stuff.

Her newest dance move!

14 months old!

              Evalyn met my brother, Scott for the first time on Friday, and he was so sweet to her. He is glad to be an uncle and even shared some of his chocolate pancakes with her, which she enjoyed very much. Scott has VIP status at this I HOP and even ordered one "to go" for Evalyn to eat later. For those of you who do not know, Scott has a developmental disability and needs some help in certain areas but has incrediable dance moves, likes Michael Jackson, and is very crafty. He will be at the Be the Match run/walk with me next week! Speaking of... if you still want to sign up better hurry or donate to my team! The money goes to helping with donor drives and helping families financially during the transplant process. We also met Emma Claire, my ex husbands newest addition. She is so sweet and pretty!

Scott and Evalyn share the love of chocolate pancakes.

              Between Scott's meeting and going back to my aunts house where my cousin Amanda was graciously watching Evalyn for most of the day and evening, I decide to try my hand again at dress shopping. This is one thing I learned on Monday at the mall: If you have gained weight think of the biggest size you could be and go up one... that way you can go down a size because going up is just more depressing. So I purchased 3 dresses at Ross, size 12, and they look good on me. Then I had something to wear to the Be the Match Tribute and will have some nice dresses for the Council meeting in November. I went to the thift store to try and find some jeans but buying used jeans ususual doesn't work for me, so I ordered some online that I know fit me right. Next on the list are some comfortable shoes that grow with swollen feet for winter, some thin large sweaters, and new undergarments. With my successful dress shopping trip, I went back to my aunts house and Evalyn I took a very much needed nap, we got up at 4:30 am that day!! She also turned 14 months old today and was very proud of her outfit that she had on, and her shoes of course.

                The Be the Match Tribute was so nice and was located at beautiful Agnes Scott University. It was probably the most "fancy" thing I have ever been too, where people were able to bid 1,000 of dollars on items to raise funds. The food was great, the wine was yummy, the company very interesting, and the decorations were beautiful. We were able to sit at a table with 3 donors and their dates/company. One guy has been called 7 times and has donated 3 times!! It was great to hear about the other side of "donoring" and just how grateful they were to be able to help. One bummer was finding out that I have to wait two years before I can meet my donor since it was an international   donor. I was able to meet patients that are 10 years out from their transplant!! I was definitively the "youngest" transplant person there, meaning only 6 months out. We were able to meet the CEO, Vice President, and other people that will also be at the Council meeting in MN in Nov. Finn, 5 years old, was able to meet his donor for the first time. There was not a dry eye in the place. Jonathan was so handsome in his new suit and I was looking fine in my new dress and short hair. I was able to raise my "paddle" once during the auction before Jonathan took it away from me. I also found out I will be on the Taylor Made Sports show tonight at 8:40 pm. Not sure the station yet.

Gracious donors for out table.

Jessica, right, donated to someone in Germany! 

            Sunday, I finally made myself, and everyone else get out side for a walk. It did make me feel better but I think I gained weight in muscle and lost no fat. GA is happy since UGA and the Falcons won, I mean let's talk about what is important here. My fantasy football team is doing great, I might win this year, just kidding guys, my husband's is doing well. Sunday night I had the thought of doing something productive like work on the baby work or something but instead I watch a movie by myself called Secretariant, a true story about the greatest race horse ever. It was a great movie. In conclusion of this crazy week and weekend, I've decided I want to go to a horse race. So there you have it.

What They Don't Tell You

They don't tell you all the wonderful people that you will meet, generosity shown, the people that go out of there way to help, the compassion that you feel, and the new doors that will open.

They don't tell you that after you get revved up on steroids and start 20 projects, that you will then lose all that energy and not be able to finish them leaving your house and porch a mess and a deep sense of failure.

They don't tell you that taking care of your wonderful child, the house, and trying to have dinner ready may be harder than actually going to a job and returning home.

They defaniny don't tell you that treatment and recovery is worse then the disease.

They don't tell you that you just won't be able to remember things sometimes, for no apparent reason, and there isn't any funding to really do a lot of research on "chemo brain".

They don't tell you that you may start to not care about things that you once did because you don't have the energy to care but you have just enough to be a little depressed about it.

They don't tell you there is a good chance you may have some post traumatic stress due to being in the hospital so much that when you hear the hospital beeps in the back ground of a phone call it triggers an increase in your pulse rate and if you liked watching hospital shows, well you can forget that now.

They don't tell you that people have very good intentions on doing what they say they will do when your treatment starts, but by no fault of there own, have to deal with their own issues, thus not doing what they said they will do.

They don't tell you that you learn a lot about who and what you judged people for, such as not having the energy to exercise even though you know it would make you feel better in the long run. Ha, running.

They don't tell you that if anything goes wrong they are going to up the steriods again and the process may start all over again.

It's a good thing they don't tell you everything, otherwise we might not have been so hopeful.

Medical Update 9/12

Well, I guess I didn't do a good job keeping you updated on Jonathan. The CT scan came back negative and his lab work didn't show much. Come to find out about 6 other people became sick after our Labor day picnic, 2 ended up in the hospital. Cultures didn't show anything but we are assuming it was food poisoning. I was exhausted from taking care of Evalyn and Jonathan that the best thing for me was to go on my trip and let Grandma's take over. I ended up getting sick on Thursday and was sick all Thursday night, in a hotel, with friends. No sleep.Then I started to feel better but never had an appetite till Sunday morning, although I insisted on eating some seafood if it killed me. Then Friday night, a sweet girl from the group that went to the beach, got food poisoning and was puking her guts out in the middle of the night. I've never heard anything like it. She is feeling better now, but not many of us slept. So I spent most of the day Sat sleeping and laying around, most the night getting hit on by strangers during AJ's bacorrette party. Good self esteem boost! It must have been Lola.  I had a good time, but the beach was still too hot and sunny for my tender skin. I mostly just recovered from the week before by sleeping a lot and now I'm trying to recover from that trip. Heck, I'm just trying to recover period. Picks to come soon!

Danger Danger Will Robinson

Evalyn loves to just sit in her Grandpa's lap!!

                                                 Please watch this Video from LOST IN SPACE

             It's been an eventful couple of days. We went to Cartersville for a family weekend and had some good food and lots of puppy love. I love the show Dogs 101 and also watched some Leave it to Beaver's, without commercials, and had my parents DVR set to record many of them. I do not generally sleep well anywhere else do to my obsession with my temperpedic bed, so realize at this point, I'm in a 3 day sleep deficit.

This may have been the hit that did it....

                       Michael and Kelley Gamboa had their baby girl, Emma Claire, on Sat, yes another beautiful Gamboa girl, but we have not had a chance to meet her yet. We hope to this week! The family played pool volley ball which is a favorite but we have not been able to play all summer long. When I say "we" I mean everyone else except me, Evalyn, and the pups. I'm still having some skin issues and didn't want want to risk a trip to Emory just to beat someone at volley ball. Plus, I was taking pictures of the dogs... very important job. Actually, that's true, but most of all, I have to choose how I use my energy wisely. Most of us do not work out on a consistent basis. My sister is in awesome shape and my brother is young.... Mom, Dad, and my hubby, well they are hurting. We woke up yesterday morning and left Cartersville as soon as possible to out drive the humongous storm coming our way. Poor Chloe has a tornado warning system inside her and she alerts us by pacing, panting, and jumping on the bed during what would be my last attempt to take a nap for 36 hours, little did I know.

Mom couldn't move the next day... not sure if it was Evalyn or Volley Ball.

Jennifer brought a new friend for us to meet. I liked him so much I had to ask him what was wrong with him. Don't try these cool moves at home and yes, those are Chaco sandles I am wearing.

                Last night, Jonathan's head, stomach, and back started hurting so bad, he couldn't really do anything. I was up in the middle of the night taking care of him while trying to figure out how I was going to take care of everyone the next day and myself. I was already pushing it by planning on taking Evalyn to meet the Meredith, who delivered her, at my appointment to have my IUD put in for hormone replacement therapy, since I didn't have a sitter. We were able to move Jonathan's "check up" appointment from tomorrow, to today, so hopefully he can go to work today. No work, no pay. He doesn't even get paid holidays now. I told him I didn't care much about Christmas, we could go set in his cubical that day and make a 100 bucks :) We will order duck, with the neck still on it. :)
            Evalyn woke up with crazy diarrhea this morning but it seemed to just be the teething issue again. We are keeping an eye, and a nose on it, and may have to take her to the doctor tomorrow. Never the less, you really don't want to take an exploding baby around and boy did she... right in the child section of Barnes and Nobles while we were waiting for Jonathan to get out of his appointment. Thank goodness I had some of the bigger BE the Match posters in the car to put under her while I changed her. Now that's funny, I don't care who you are. This was of course after my appointment where it took two uncomfortable tries to put the IUD in while Evalyn was crying, horrified at what this person was doing to her mother, all the while making very loud farting and general diarrhea sounds. Evalyn, not me. Evalyn was very impressed with the kids section at the store and was very happy even though she was missing her nap, a usual reason to have a meltdown. Instead she found a little stuffed animal, not a book, that she loved, because it looked just like Chloe. Considering the traumatic experience, I bought the $7 toy, writing it off as a "well she is sick and has to put up with all this" gift.

The love Beagles.

                    Jonathan had to end up getting blood work and a CT, we are awaiting the results. All plans for the day were cancelled and changed. The laundry is not done, dinner did not get made by us for the Gamboa's or Emma's feet kissed by me, banana's were not purchased, the goodwill pile is still there, and I can't remember when I last took a shower. I'm suppose to be leaving on Thursday to go to the beach with my friend AJ and a lot of her friends for a pre-wedding weekend. I do really hope that I get to go... I already paid for it, got permission from the doctor and have called a real bed. I have plans to ride a bike on the beach, eat oysters, read Middlemarch, practice kids songs, see Charleston for the first time, visit with an old friend from college, smoke one cigar, and a drink bloody mary. Is that too much to ask? Lord, have mercy. I'm the oldest of the group, ha ha. Jonathan's had to remind me that I am 31 instead of 30 when I was unsuccessfully trying on my old prom dress on. It went in the good will pile, then the "maybe to sell pile". It is very important to me to have these piles gone before I leave but plans do not always work out and piles I may have to let go. My Grandma Judy and mother in law Carol are coming to look after the house and the family while I'm gone. Pray that all goes well :) I'll keep you updated on Jonathan when we know more, just pray that the Lord gives me energy to take care of everyone and myself. I might have to call a code red if it gets any worse.

Evalyn was the only one that really knew that the Dawgs would not win that night.

She said Uncle Daniel this weekend!

and Wallace caught his first Frisbee! 

Teething, Back Fat, and the DAWGS

               

         Poor Evalyn has molders coming in on all four sides this week and it has caused a runny nose, cough, low grade fever, irritability, meltdowns, and frayed nerves. This week has been very difficult for me physically. I'm so, so tired that every move has to be thought about, and thought about, and then I might make a move. I think that after they start the hormone replacement therapy next week, I will start to feel better and hopefully Evalyn will start to feel better also. The plus is that she has been taking longer naps :).
                 So I have back fat. You know that little roll around the back rib that makes your bra, ladies, or bro, guys, not fit right anymore? Yea. That's great. I'm wondering what is going to happen to all this skin when I lose the weight. Tummy Tuck? I wouldn't put it past me. I led music class today at Full Bloom and they had a childs and a maternity fashion show. I was gathering my musical instruments and other items when the pregnant women came into wait in the same room. I didn't want there to be an awkward question about when I was due or something, since I was in the waiting room for the fashion show, so I went on to some how slide in the fact that I was on steroids and should maybe buy some of the clothes. Weird.
                 Music class was so fun, I taught twinkle twinkle little star in language and this kids love the shakers. I hope to make a little part time thing of it and can hopefully earn a little spending money. Speaking of money. I'm officially disabled.... that is so strange.... most of the time I don't feel that I am, then sometimes I know there is no way I could really work right now. Playing my guitar and singing every once in a while is not work, that fun, and I don't HAVE to do it. I am very impressed with the Athens Clark county ladies at the SSDI office. They work hard to get my disability rolling within about 40 days, which is unheard of, they were so nice and understanding. Apparently, acute leukemia is a "shoe in". I hope to go back to work at least part time as soon as possible, or go back to school, or win the lotto, or recover from a stem cell transplant. Geez, I gotta get off these steroids.
                 It's football season again. I love the beehive buzz that Athens gets but I don't really care about football. I want them to win so that everyone will be in a good mood and I don't feel like I have to cheer everyone up. To me football, is beer and wings, and I get to dress my little girl up in something very cute. If there was a pill I could take to like sports better, I would in a heartbeat, as long as it didn't contradict with my other meds. Don't get me wrong, I had the earrings on and red and black and watched part of the game, but really I just wanted to snuggle with my little bulldog, Wallace.