Boring... but the the nurses and docs in my family all like to know the details.... and then there are the weirdos that would like to secretly work on lab rats, then there are the people going through the same thing... yes, I'm up, been up since 3am or so. Not sure how someone has such a tolerance to anti anxiety and sleep medication. In pain? Nope. I guess I just have a lot on my mind.
Today at Emory everything went smooth and when I say smooth, they didn't add anymore appointments, infusions, and didn't admit me. I almost had to pull a Jerry and George in the parking lot I had to go so bad (3rd season, 23rd episode). I started off the visit with 2 lbs of weight gain and an anti-blue-mask demonstration, (which I'm suppose to wear anytime I go outside, yea right, and the yellow one other places, blah) so I wore it on top of my head like a Jewish Kippotl. It made Dr. K laugh. He introduced me to himself, and two other ladies that I have known and I told him that my memory was not that bad yet but he must have some patients that are that bad. The rash is getting better but we still do not know if the rash is totally caused by the GVHD or the oral chemo.
So at this point in our little experiment: I'm reducing the steroids by 20 over the next two weeks.... no rash still.... then we will start back the oral chemo. If the rash starts to come back, it is also the oral chemo, which doesn't matter because I have to have the oral chemo but maybe it will change the way they treat it or I can get on the next upcoming drugs asap. Other than that, I have HBP due to the suppressant drugs, the CMV virus, and my eyes are going nuts. I'm also having hot flashes like you wouldn't believe and even wore a dress today with sandles and got a lot of compliments.... they were kinda more of "you don't look like a bum" or " ahhh you look 3 months preggo cute", nahhh some people like my new weight. I'm not one of them. I start two new meds tomorrow "(Valcyte & Norvasc), stop one (an antibiotic), continue to hold another "oral chemo", reduce one, and reduce one again on Monday (steroids). The lowering of the steroids is always a positive sign, it just unusually is very hard coming down,:bone pain, depression, not caring if anything gets done, etc. So some the productivity you have seen may come to a halt again and I will be in bed calling my mom. Yet maybe it will be different this time, the bone pain got better this week and I know that has to do with all your prayers.
As I said before, one of my meds gives me terrible gas.. I mean like dog fart gas. It's very embarrassing if you are in an exercise class or trying to get sweet with the hubby. I think Wallace even left me one day. If you smell something around me, it's me... comment, don't comment I don't care, just know there is more where that came from so watch it. Dr Khourye won't let me take probiotics right now. He also said to not eat veggies, fruits, or dairy for two day. I asked him what I was suppose to eat and what kind of example would that be for my tot, not to mention my husband. He said to eat candy, popcorn, or whatever I wanted. More thin mints please! Boiled peanuts, twizzles, sushi maybe, and beer. That's all I can think of right now.
Not to mention the chemo brain, I don't know what I just read feeling. I got lost twice yesterday, even had google maps printed out all old school. I swear, I would read left and turn right. I think I would have pulled a Michael Scott and followed a GPS into the lake. I've been able to laugh at myself, however, I have a stubborn streak with this memory thing... I refuse to put my mother's new work number in my phone because I like to memorize numbers and for some reason this one is giving trouble. Yea, I like to dial numbers too. Guess, I've lost or broke phones a lot, or maybe that my autistic tendency, everyone has one I beleive. As my brother Scott said today, it runs in the family. Being Stubborn that is. Great news, I don't have an appt. for 2 weeks..... first time since Oct!!
At the end of the day, I was able to get there and back, see my brother Scott, meet someone that went to IKEA for me, stop at Garden Ridge, make some phone calls, go to small group (see my new favorite verse to the side), have 3 successful babysitters for Evalyn (who together made our bed, washed some clothes, played, read, and brought food), and did all my meds stuff except the eye compression.... don't know why I forget that one. They are either watering like I'm crying or red like I'm a stoner. Not too bad if you ask me.
I appreciate all the comments from the last post and enjoyed reading about some of my readers... I do need to pray for others besides myself. Speaking of that... I think tomorrow is when one of my family members is getting blood work to see if they are a match for a 4 year old in California. So EXCITING. Wait, that's today.
Hope you have a good one. I leave you with the song that got me through the day and I plan on singing with my Uncle John. Boy was I dancing, the peachpass peeps must have caught me on camera, hopefully I made some other drivers laugh. I think of the 'gone' part as 'my health' when I sing it.
This song has souuullllllll. Sorry if you get a dumb political commercial before the video.
http://www.youtube.com/watch?v=0kPFrQPdKPM Click there!
I've really got to use my imagination
To think of good reasons
To keep on keepin' on
Got to make the best of a bad situation
Ever since that day
I woke up and found
That you were gone
Darkness all around me
Blackin out the sun
Old friends call me
But I just don't feel like talkin to anyone
Emptiness has found me
And it just won't let me go
I go right on livin'
But why I just don't know
Staring down reality
Don't do me no good
'Cause our misunderstanding
Is too well understood
Such a sad, sad season
When a good love dies.
Not a day goes by
When I dont realize
I've really got to use my imagination
To think of good reasons
To keep on keepin' on
I got to make the best of a bad situation
Ever since that day
I woke up and found
That you were gone
Hi Heather. My name is Carla Irwin. I live in Birmingham. I have been following your blog since I heard about Danielle. Her Mom is a friend of a friend. My 30 year old daughter is Taylor Silvio. She was diagnosed with ALL in January 2011. She had a BMT on November 5. She is doing well. Still weak and low white blood cell count. But so far everything on track and positive. I am so sorry for all your problems. You have been through so much. Your daughter is so beautiful! Taylor may not be able to have kids. It's been tough to watch her and all the other patients at UAB suffer. Cancer is a terrible disease. We are proud that we have been able to raise over $20,000 for LLS and Be The Match. Take care of yourself and keep writing!
ReplyDeleteHi Carla. My name is Greta Hill and I just realized from where our mystery donation came. Thank you so much for your donation. We had just finished our Saturday long run when we got your donation notification. You really made our day and our original goal! We will run our half marathon with your daughter's name on our shirts. I'm so sorry any of us have to deal with cancer. Please know we will run with you, your family and friends on our minds and in our hearts. Thank you!
DeletePeople connecting on my site.... this is what it is hear for. Yahhhhhh! Carla, i know that it is difficult for Taylor to realize that she may not be able to have children. I think about it every day even though I'm so lucky that we had Evalyn. I have been working with my OBGYN and a specialist in Atlanta that is suppose to be one of the best in the southeast. They have worked out a hormone replacement therapy for me, which I need since I'm going through menopause, and she may too. Did she also have total body radiation or just chemo or both? The plan may be, if I can get off the oral chemo safely after 3-4 years, I may be able to carry a baby with a donated egg. But they are "saving" my uterous through the hormone treatment. Other options may be a sarrogote mother, hopefully someone in our family. It was something that I had always wanted to do for someone at some point in my life. God also has place a special desire for foster children and always has.... so who knows. What I do know if thatif we seek after the Lord, it is he that puts those desires in our heart and he who promises for them to happen. The doc in Atlanta said there is also funding for those who have had cancer since all of it is so expensive. I would love to get you in contact because it's never too soon to start discussing that. Wow, 20,ooo! That's awesome. I'm working on getting a team together again for the be the match run and also spreading the word about Greta's run
ReplyDeleteMy oncologist RN daughter asked Taylor's doctor first thing about harvesting eggs and he said he didn't think she needed to. That now more and more people are going through treatment and still giving birth. I think he just wanted to start chemo right away. She had six rounds of chemo and was in remission. Before the bmt she consulted with a fertility doc who didn't give her much hope. During the intense chemo right before the Bmt she had two total body radiation sessions. I believe God has a reason for everything. We will accept his plan for Taylor and make the best of it. Right now all we care about is her survival. She is getting married in April and that is keeping us busy. Greta, I was happy to donate to your great cause! Best of luck and thanks for running for those who can't! Carla.
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