Wednesday, March 4, 2009

I Need a Spa Day

I haven't had much time or inclination to blog lately.. but here I am. The past couple of weeks have been painful - ear pain and heart pain.

Life has been quite stressful lately. For one thing, Devika has been having adjustment/attachment issues. She has been screaming her head off if I am not holding her - ALL the time. Even if I go to the bathroom and take her in with me - she flips out when I set her down. Not only does she scream, but she throws her head and body backward at full speed.. and flails all over. It is crazy and horrible and I'm always afraid she will seriously hurt herself. Nothing will stop it, other than my picking her up. Aj and I have disagreed a bit on how to handle this - he didn't think it truly was an attachment issue. I talked with our agency rep, who happens to also be a good friend of mine, and she gave me very good tips on how to handle it as an attachment issue. The more I spoke to her about everything that has been happening (including sleep issues, eye-contact issues, terror of music and other non-every-day sounds).. it became very obvious to me that it is attachment/adjustment related. I've already begun following some of her advice (as has Aj - he just needed more 'technical' explanation to understand what was going on).. and I'm seeing a slight difference already. I hope it continues to improve, and I think that it will. Criminy.. it has been a painful 2 1/2 weeks of screaming fits.
Ajay has nicknamed her 'Screamika'. Fitting eh? :)
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I've also been a bit down recently because of my mom's failing health.
She has been so very sick this past month. I guess we were a bit 'spoiled' by her sickness in the past. She has had some bad chemo side effects, etc.. but nothing completely devastating. Or at least, looking back, they weren't devastating - just unknown and scary. Now she is actually not able to motivate herself to eat or drink.. she keeps getting dehydrated and needing an IV hydration. She has lost sooo much weight.. she is very very underweight now. She is on pain killers for her side pain, and they are making her incredibly loopy due to the fact that she isn't eating/drinking. She was taken off the chemo a couple of wks ago and the oncologist told us last week that basically she is at the end of the road re. treatment. Her treatment has caused blood counts to plummet, vomiting that responds to no drugs, etc.
Quite devastating news, even tho we all saw it creeping up on us.. we just do what every other cancer victim's loved ones do in this scenerio: we deny that it will happen in OUR case - surely there will be a miracle of some sort - or at least a couple more years of very slow disease movement so that we have more time.
TIME. Where the hell does it go.
Anyhow.. her oncologist is now talking about potentially putting her back on the chemo.. but I don't really understand what is going on. I think maybe I will try to join her at her appmt on Monday and fill in the blanks. It's hard being a few states away and trying to decipher all of the information and updates. The chemo has basically been killing her - she became nauseous and this led to the decline (no food/water/dehydrated - led to very low blood counts, etc). We hope that her 'loopiness' is due to the pain killers, but I keep hearing about the onc. wanting to do a PET or CT scan on Friday to check some 'spots' that, to this point, had not been growing. These spots are on her liver and brain. Yikes. Very scary stuff.
Ok.. that's all the update I need to spew out right now. Just scary to be so far away when she is in such a 'touchy' situation. She has been very unstable the past month. I'm flying in to see her and help her and dad out on Sunday - staying thru Thursday.
I hate this hideous nasty disease. Leaves you feeling so powerless. For a person who likes constant control, this is almost unbearable. Thank god I have some distractions. I mentioned that I'm training for the Tri For The Cure Triathlon which is coming up in August. I'm still working my butt off - I started week 6 of training today. Whoohoo! I actually ran 20! straight minutes a couple of days ago. This week it raises to 25.. yikes. Hope I can do it. Every time I start to struggle mentally with the running, I just think of all the crap that my mom is dealing with.. and how she sure as hell would love to be in physical condition to do this.. so I press on for her. I hope I can raise some money with my fundraising for this triathlon.
I've also decided to join the Komen 3-day 60 mile walk. Only issue is that Ajay would like to do it with me and we need to have someone here with the girls. Maybe the in-laws could make a visit.. or maybe one of my friends who is reading this would like to join me? Would rock if we could get a little team together. Come on - you can do it!! I think that my siblings should at least join me.. anyone? anyone? Bueller? Not sure how many people I could talk into training to walk 60 miles.. the couple of people I've mentioned it to have looked at me like I just landed in a space ship. It is SO inspiring though. If you can't join, I hope that maybe you will make a donation when I get my fund raising page online.
Please watch this video if you have not heard of this awesome event:

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I'm glad to have these goals, as they give me a teeny feeling of control and empowerment - like maybe I'm doing something that will benefit someone in the future who has to deal with this disease. I would not want to see any of my sisters or my girls having to fight this.

Ok, enough of that.

So Maya was on a roll yesterday with some funny remarks! I had to jot them down.. they brightened my day so very much. :)
  • Regarding chocolate cereal straws, which are currently her fav food item (and unfortunately she often eats them in our bed while watching cartoons at 6 am every day.. they leave hideous amounts of crumbs): "I am not an addict.. I'm a tattle-tail!" ? Obviously she has been tattling at pre-school??
  • While wearing her over=sized butterfly towel-robe after her bath - she began running around the house yelling: "Booo! I'm a ghost who needs underpants!"
  • Before school, upon walking outside and lifting her face and arms to the sky: "It's such a beautiful morning! The birds are flying, the sun is chirping..!"
  • It was chilly this morning and my arms had goose-bumps. Maya said, in alarm, "MOMMY! Your skin is standing up!!"





10 comments:

Nadra said...

Amy...you are so right...you do need a Spa Day. Cancer is a horrible disease. My heart goes out to you. I pray that the oncologist can come up with something that will make your mom comfortable. Thinking of and praying for you.

Julie & Patrick said...

Having been through it with my mom too, I totally understand the whole cancer roller coaster and it is not fun. I applaud you and your families supportive attitude. It is so very difficult.

Hope that little Devika settles soon too.

Book a spa day today!
Julie R

Peter and Nancy said...

I'm so sorry to hear about your mom's pain levels and prognosis. It makes for a difficult combo to have Devika need you so much while at the same time wanting to help your mom and dad -- no wonder you need some time at a spa!

I'm grateful for the blessing of your training, as a distraction and as a way to help others. How awesome of you to be thinking of others when you're in the middle of so much hardship.

Hang on girl. I will pray for you and your family,
Nancy

Candice said...

So sorry to hear about your mother. I cannot even imagine what you are feeling as you walk with her through this time. I am so glad that you were able to talk with someone about Devika and find something that seems to be working. I hope she continues to settle in. Such a precious video. I'm glad you all have each other!

Kristi W. said...

Yep, book the spa day! Hope you get some AWESOME news about your mom soon, I will be praying for that and Devika's attachment stuff.

Hang in there...

:) Kristi

ColleenC said...

Oh, what a time! I hope there is some good news for your mother and that your little one keeps progressing. Some relaxation is definitely in order!

Amanda said...

Hope the doctor can find some relief for your mom. I also hope Devika settles in soon (again).
I would love to do the 3 day walk. I'll have to do the east coast though. I'll be cheering you one for your tri. I've got my eyes on a marathon in October.
Keep running. It gets better.

A and Z said...

Hey Amy i am behind in bloggin and catching up with blogs but just read yours. SO sorry to hear about your mom. As for Devika I feel like zaleeya is bak tracking a bit too this week. Maybe we should email offline.. I'd like to hear more about the 3 day walk too!

Pam said...

Oh Amy. I'm so sorry you are dealing wiht all of this. Just one is enough. Praying for you and your family during this time. Praying your mom gets great news soon.
Hugs,
Pam

Amy said...

Praying for you!! You definitely need a day at the spa :)

Amy T