So, yep, I find myself many times not wanting to talk about it, think about it, look in the mirror, or think about the next several months. An appropriate adjective might be overwhelming (at least at times). I am fighting the temptation to withdraw and hide, and love it when I'm out with friends and family.
Some highlights since the last post:
It was so great to watch Ben and Music City Mystique in the WGI Finals in Dayton. Here are a couple of videos:
Finals Warm-ups in the Lot
Finals Performance
During the finals, the tech component didn't connect, which meant their overall effect was not as high as it should/could have been. SO...they went into finals in 2nd place, but ended in 4th. HOWEVER, they had an amazing score of over 96/100, and we couldn't be more proud.
Since in the finals performance above, you don't see what should have been on the TV screens in the back, let me share what you should have seen:
Gamemaster starts loading the sequences that the players have to win against.
Sequences in order are: Predator, Hurricane, Earthquake, Heat, Swarm (knowing that, you can watch the video and understand which sequences the players are reacting to).
Once all the sequences have gone through, the gamemaster begins uploading all sequences at once. This is when the players "fight back" and the cymbal player ultimately triumphs by removing the gamemaster's mask.
This photo is from semi-finals at the very end of the show. The TVs were working at semis!
I am so very thankful for mom going with me. Way before I was diagnosed, we had planned to go together for the finals, but it worked out so great. I had treatment on that Wednesday (April 8), and I knew that the weekend was going to be very tiring. We stayed in a great hotel not too far from the stadium. I borrowed a wheelchair from the church, which enabled me not to have to walk so far. In addition, I got tickets in the ADA section (on the main walkway with the bar in front of it). I would have been way overwhelmed if I had sat in the arena seating area with so many people. Lots of things worked out really well.
This was my view:
MJ and her mom, aunt and family friend were at the semi-finals and finals as well. We enjoyed dinner with them and Angela Dickey (Sarah's mom from Hoover....Sarah played synthesizer in the front ensemble and has been an indoor drumline friend since Ben's early high school days with DoubleStop Indoor Percussion time) at the Rusty Bucket restaurant.
Mom and I got back home on Sunday evening, April 12 after a smooth drive home.
Going back to the April 8th treatment day, mom took me to Kirklin so she got to see where that is. I had blood drawn, which they will do now every time before chemo. They check red and white blood counts to make sure they are where they should be.
I had the chance to talk to the nurse about the Dayton trip, and some other general questions. Here's some things I learned:
1. I should not take how I feel for whether or not my blood counts are good. In other words, my counts could be low, but I feel very good, or I feel sick and my blood counts could be fine. She pulled my counts and showed them to me, in relation to the Dayton trip. The counts were all in good range, so she was positive about me going on the trip. We had talked about possibly using a mask, but she didn't think it was going to be necessary, especially if I took breaks in open areas every so often, and sitting in the area where I was was also helpful.
2. These first four treatments (March 25, April 8, April 22, and May 6) are the worst, in terms of the effects of the chemos. I was feeling so good on the morning of the 8th, I asked her if I could count on feeling that good in the 5 days (or so) leading up to the next treatment. She said that there is a cumulative effect, meaning that the April 8th treatment effects would last a little longer, then the 22nd, a little longer than that, and the 6th as being even longer. BUT, good news...she said the last 12 weekly treatments will have less effects than these first four as it's a different chemo. Yay for that!
3. She gave me some advice about the side effects...I can continue to use Ativan as needed for sleep/chill in the evenings, but I can also use Benadryl with similar effect. I need to monitor the anti-nausea medications because they have side-effects, too. The inside of my mouth has become much more 'raw' or sensitive, and the salt/baking soda solution she recommended has helped a lot.
My hair began shedding right before the April 8th treatment. I had it cut very short, but not shaved. Picture going from a pet's shedding to clumps of hair coming out (for you movie buffs, picture the cheerleader in The Craft, whose hair starts coming out due to the young witches curse!). I'm still trying to get comfortable in various hats and scarves, and will try out the wig this next week.
You all know I don't like having my picture taken, so it's awkward for me to get excited about posting pictures of me in the wig or hat or scarves, so if that becomes better for me at a later time, I will let you know!
On the day that we got back from Dayton, the Stop Hunger Now truck had delivered some of the equipment needed for the event to begin on Monday, April 13. So much praise and joy about this amazing event. Our goal had been to raise about $72,500 to pack 250,000 meals through Stop Hunger Now (Website). We had a fantastic team of lay members with some additional assistance from some area churches (ultimately, we had 14 churches support us either financially and/or with volunteers). We raised more than our initial goal! From the 13th-14th, we actually even packed more than our original goal, and packed 251,364 meals! It was totally overwhelming, wonderful, awe-inspiring, amazing, and whatever other adjectives you could use. I was not able to hang out very long at any time that I came in (I got tired very quickly). Probably my favorite time in the Fellowship Hall was walking in on Tuesday at 11:00. We had 100 children from Vestavia East Elementary School with another 100 adults in the room, all happy, dancing, smiling and working! A couple of the kids told their teachers it was their best field trip! And several of the kids brought their parents back for a later shift after school.
I'm still trying to adjust to deciding how to spend my days. At this point, I find that being out and about 2-5 hours a day is gracious plenty, and allows me to see people as well as to have some quality rest.
Bill and I have been so grateful and enjoying meals that people are bringing to us...THANK YOU! I have finally understood what that means to the recipient.
I have a regular appointment/check up with the oncologist on Tuesday, and my next treatment is Wednesday. Rachel is going to my appointment with me.
I guess that's enough for now....I'm reading a book a friend gave me called Fight Back With Joy. One of the things the author says is "Whenever you experience a sense of withness - the awareness that others are alongside you - you can't help but experience the presence of joy." She remarks on Paul's letters to Philemon as recognition of the best kind of people to be around - those who encourage and provide hope and joy.
Though I have moments of isolation, I do acknowledge and SO desire and appreciate your friendships and love.
Peace out!
Denise
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