how do 10 days go by?

so lots to update on...I just haven't felt up to writing but this morning is definitely better.

Last Tuesday, April 21, Rachel took me to an appointment with Dr. Nabell (who I usually don't see during infusions).  I had realized that my heart had been pounding for the past week and a half or so...even when I was just sitting, I could feel my heart racing in my chest.  Sure enough, my blood pressure was up, and the blood counts showed some elevated numbers.  Dr. Nabell said the steroids that I was given during and after infusions could definitely be pushing my heart, etc.

SO, she revised the amount of the steroid shot given right before the infusion, told me NOT to take the steroid pills that were prescribed for 3 days after the infusion, and gave me a prescription for Verapamil, which she described as a beta blocker and would help with my symptoms.

The lesser doses of steroids made me nervous, since I know they have helped me with the first initial days and it had been expressed to me that they were great in keeping my energy up.

BUT I got the Verapamil filled immediately that day, and the next day when I went in for my infusion, my blood pressure was already in normal range.  And my heart hasn't been beating in my chest as before.

I also had an echocardiogram done yesterday (Tuesday).  This is basically like a sonagram that they do to check on a baby, but they do it to view and hear the heart.  The technician said she thought things looked good, but obviously, the doctor would need to review it.  My next appointment with Dr. Nabell is next Tuesday (May 5).

The primary bummer from the April 21 appointment was that Dr. Nabell said she believed I need radiation regardless of whether I have a mastectomy or not.  She said she reviewed my info with another doctor, and they agreed that they believed the initial site of cancer was right beside the lymph node that basically swallowed it, and so that area needs to be radiated.  Decisions will be made in the last months of chemo treatment in terms of surgery and radiation or just radiation.  Right now I'm just trying to process this, and I'll learn more about what the treatment is like and what it means as time goes on.  I was definitely hoping that possibly surgery would end everything and I could avoid radiation, so I'm wrapping my head around that.

Last week's infusion went fine, with no surprises.  Bill took me, and we had a lovely Fish Market dinner BEFORE my appointment.  Got home, and just chilled.

On Thursday, I got out in the afternoon to go to church to see the car ministry give a car to a mom and her 23 year old son.  The son  has been battling leukemia since he was 19, and has recently come out of remission.  It was a joy to be with several car ministry folks to turn over the keys to this wonderful mom.

That was the last time I was out of the house until yesterday, when I went for the echo.

I had intended to get out in the morning to go with Bill for his consult with the gall bladder doctor at Kirklin.  BUT when I woke up yesterday, I was very nauseated and weak.  It occurred to me (finally) to take one of my anti-nausea pills (which I take as needed), and after 4-5 hours, I felt better.  Bill took me to the echo, and then we even went to the grocery store (I was out of my Greek yogurt!).

Bill's appointment was very productive.  He met with the surgeon, the anesthesiologist, and everyone else who will be involved with his surgery.  He went through pre-op, and has everything ready to go.  They will go in through his belly button!  Who knew?  Surgery is scheduled for Friday, May 8, and will take between 4-8 hours.  They were very thorough with him about their expectations, which is very comforting.  No lifting or heavy work for a couple of weeks, but the following week at some point, he could work as long as he feels like it.  They don't anticipate any complications or major issues.  Bill will certainly be glad to have this part over, as it's been a concern for how he feels on a daily basis.

So, I'm very happy that we have some things planned, that I am managing my meds and figuring out what to do when I feel crappy. I appreciate everyone's patience in me getting any info out.  The weakness in mind and body is very different and difficult to explain.  So grateful for my friends who continue to bring meals twice a week.

Caden turned 10 last weekend!!  What!!!???  Rachel, Steven and Caden were out of town, so we'll have our time with him this Saturday.  So looking forward to it!  Ben wants to take him to the zoo or the science center, and we'll have our celebration at some point during all of that.

Ben is working individual days/weeks with different school system bands around the state.  He's looking forward to creating new associations/friendships, while expanding his resume!  MJ will be starting an internship/job at Children's Hospital emergency room soon.


Love y'all!

sometimes it's hard to write

Hi!  I am finally getting to writing out some info from the last week and a half...There's nothing bad to report; in fact there's lots of praises.  I'm kinda surprised at myself for how hard it's been to get myself to pull up the blog again.

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!

 The photos below were taken after the finals award ceremony.  About half of these young people have officially 'aged' out now, meaning that they can't be performers in WGI again.  Ben has one more year to perform with them, and we truly look forward to the next season.

 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

Delayed Update!

Hi everybody!  Holy Week was so great for several reasons...great Lenten lunches and speakers, services, Easter morning with Caden, then Easter lunch with Ben, Caden, Rachel and Steven, and Lynne.  Saturday had Bill, Ben and I going up to Smyrna, TN for family night, Music City Mystique.  It was FAB!  We watched a little bit of rehearsal, then the group came out and did a 'concert-type' version of the show, and then did the whole show.  They've continued to tweak the show and the changes make it even better!

On Friday, Cathy and I went to Good Friday service, and then went looking at wigs and hats.  Then today (Tuesday), we went with Rachel to check out eyebrow makeup!  I know for you guys that doesn't mean anything, but you ladies will know how important it is to have SOMETHING above your eyes!!

Mom came into town tonight, and she'll take me to treatment tomorrow (Wednesday).  I go in at 11:00 for blood work, which they will check each treatment time for red and white blood cell levels.  Treatment starts at 12:00.  They were very accurate last time with the length of time (about 2.5 hours).

The nurses were also very accurate with their predictions of symptoms, etc.   I've got some questions to ask tomorrow, in terms of how similar will this next time be to the last time, and how different or similar will the treatments be after the initial four treatments (when I start the weekly treatments). These last four-five days have felt pretty normal, and it would be nice to know if I could expect that each time.

My hair has started falling out...I noticed that my arms are completely hairless today.  I have some major sensitivity in my mouth (which has the cells that frequently generate like hair).  I got my hair cut very short this afternoon so that the hair falling out won't seem so bad (I hope).

I have worked with Malinda to take a couple of months off of work (thank you Malinda!).  My goal would be to really focus on friends and family (which sure includes many of my church peeps) on those days where I feel good.  I know the 2 months will go quickly!  Everyone has been so great to help out and be supportive.

HOWEVER, I can say with MUCH JOY that VHUMC folks made our goal of $72,500 during the Lenten season (and with some partnerships with other churches).  This will allow us to package 250,000 meals for Stop Hunger Now (www.stophungernow.org) next Monday and Tuesday.  So excited!

I'm also really looking forward to mom and I going up to Dayton this weekend (I know that sounds a little crazy, and it is), but Ben's group is performing in the WGI World Championships!  Thursday night are preliminaries, Friday is semi-finals and Saturday is finals.  Their group won first at the Regionals, and they are in very good standing to win the whole thing.  It's been several years since they've placed first, so it is VERY exciting!!

So, it's good to go into tomorrow's treatment knowing that I have something to look forward to soon.  We are planning to rest during the day and then get to the shows in the evenings for about an hour or so (as energy levels go).

Hope that y'all are well, and reveling as Easter people.
Denise

From Saturday: