Absent

I always know that it has been an inordinately long time since I have managed to post anything when I start to get the emails... People are just caring, loving and concerned but what they really want to say is, "WHAT THE HECK IS GOING ON WITH YOU???". If I'm honest (and really, why stop now??), I'm struggling. I'm mired in a bit of a pit right now and seem to just be wallowing there searching the basement freezer for old, leftover Christmas cookies while I sit immobilized on the couch (during naptime, of course!) watching old reruns of Law & Order (I think that "SVU" is my favorite...). It isn't pretty. I didn't gain the dreaded chemo weight but I've put a whole bunch on since then! Enough already with the indulgent, "I deserve this" eating. Actually, now it is more like "wallowing in self-pity" eating... ugh.

The good news is that I finally called about the shoulder lesion biopsy and while they said that it wasn't nothing, it isn't anything to be concerned about. They called it a "deep" scar or some such thing. But... it's not cancer! yay!

I finally heard from the coordinator of the bisphosphanate study that I signed the consent for 6 weeks ago and wouldn't you know it, I was randomized into the arm for the IV drug. UGH. Looks like I should probably get comfortable with this port because now I'll probably be holding onto it for another 2 years!!

Radiation is producing a lot of itchiness and redness but I guess nothing that they weren't expecting. They did a lot of lecturing today about taking it easy, resting, etc. etc. I guess that if you try to keep pushing through the fatigue there is a high likelihood that you will totally crash. I'm trying to heed those warnings but that is just not something that I am really good at and... I'm just so completely over all of this stuff!!! I just want to get on with my life already. I keep wondering at what point I will realize that this IS my life...

So, that is the gist of it. We are up and down, mostly down right now. Darin came across some headline about a prior Survivor contestant who recently died of stage III breast cancer at 37, we picked up a random movie off of the Redbox only to find that the main female character dies of cancer, slowly... I think that all the everything of the past 8 months is just catching us and while we are functioning and doing "fine" in a day-to-day sense, we are just so, so weary of the journey. Our emotions are raw and our strength is fading. (which probably means that we are relying far too heavily on our own capabilities and not enough on the Lord!) Without ever verbalizing it, it seems that we are just trying to get through the rest of these treatments and whatever side effects they bring by gritting our teeth and hanging on for dear life. Keep the prayers (and the meals... goodness knows that I don't need to eat but neither do I have the energy to plan or cook! ha ha) coming. We need them now almost more than ever. You have all been so incredibly faithful to us that I hate to ask for more, but this feels like one of those times when we just look to heaven but can't even seem to muster the words. We need some peace, some rest and some kind of mental and emotional escape from this cancer world...

9 down...

... at least 22 to go. And thank you to the celebration of MLK day, I get a Monday to completely finish my laundry. If you know me at all, you can imagine what a cramp running out of the house every day at 8:55 has put into my "schedule". Darin is probably loving this little deviation from my typical "regimentedness" (there are times when I think that I should've been a speech writer for the Bush administration...). And truthfully, I have lost a lot of my previous ATC-induced ability to "adapt and overcome" (and you thought that I wasn't listening Larry!). It's a skill and I've let mine lapse by being very stuck in routine (although that's not to discount the way that Moms everywhere adapt and overcome every single day! ha ha...). So now I am forced out of mine and working hard to keep all of the plates spinning. Sarah Young had this to say today... "Disruptions to your routine highlight your dependence on Me. Trusting acceptance of trials brings blessings that far outweigh them all. Walk hand in hand with Me through this day. I have lovingly planned every inch of the way". wow...

As usual, I got off to a good start here and then Darin came downstairs ready to go to work (so I got up to get his lunch together and pour him some coffee). I poured myself some more coffee and got back at it when Parker came down the stairs saying, "Good morning Mommy". Now he has joined me on my lap and is asking me to read everything that I am busily typing. Today we are planning to make some drive-in movie cars out of large cardboard boxes today for movie night at Kidz Krew this week. Dryden told me that he wants to win third place. hmm... somewhere we went wrong if he is striving to only succeed a little bit... He's not trying to get first prize, he just wants to place. Ooooh, even funnier Dryden story... last night we were watching the last half of Return of the Jedi (the saga rages on for us here... you'll get that if you go back to Day 1 of this blog), which we started last weekend, and I was trying to make a moral lesson out of the way that Darth Vadar aged after turning to the Dark Side by saying something along the lines of that is what happens when you live a life of evil. Darin is over on the love seat rolling his eyes when a little voice from the couch said, "Grammy is all wrinkled and old but she isn't evil". HA HA HA!!!!! (and, just so you know, I called her to tell her this so she isn't finding out here...) So... that lesson backfired a little bit but it also gave us the chance to reiterate that, no, Grammy is not evil and neither is she that old!

I wanted to send out a huge thank you to the many people who so lovingly responded to my meltdown of the the first week of radiation with cards, emails and so many encouraging words. I know that you are all praying for us but the extra reminders were timely and so uplifting. (especially that book that you found from Dad & Mom to Grandpa, Aunt Faye! It's so neat to have that even if the circumstances are not so great...) The continued meals were a great idea, Shawna. Thank you for talking me into that. It seems kind of wrong since I am not feeling so sick anymore, but it is so nice to not have that on my plate every day as well. What an ongoing blessing (and the bonus now is that I also get to eat and enjoy them!! hooray!).

Our weekend was quiet aside from the Flexitouch trainers session on Saturday morning. I could definitely go on and on about this situation but that accomplishes nothing and the bottom line is that I am fortunate (I will stop short of saying "lucky"...) to have access to something like this in the privacy of my own home. I will say that Darin walked in during the "training" and watched them help me figure out how to don this contraption with a look of horror and pity. At least now he knows that I wasn't totally overreacting... Naturally Rock had amazing words from the Lord on Sunday that, as usual, both encouraged and convicted me. One of my favorite thoughts as I get this week started is as follows...

"The Holy Spirit leads Jesus' followers to places they had never planned on going and places where they didn't wish to go at all!" Can I get an AMEN from the congregation??? But this is part of being truly dead to self and alive to Christ. Not an easy task but the only way to be free.

This too shall pass...

...or not... some of it actually won't, but the good news is that the emotions do fade. I am having a much better week. And it is - as usual - such a learning experience since none of my circumstances have changed! It is a good reminder that the words that my mother used to say to me all the time as a child - "you can choose your attitude" - are absolutely true! However, I'm also a true believer in the necessity of acknowledging and giving a little respect to your feelings. Doubtless it will all come back around since I'm only into week two of radiation (i.e. still waiting for the side effects to start kicking in...) and I heard those words that I was expecting at this week's check-up with Dr. Mehta (who is, as my PT described her, Indian Barbie. She's beautiful, obviously very smart and has a wonderful "bedside" manner), "with your fair skin it's going to get ugly". Lovely. Additionally, I am still awaiting the arrival of the dreaded sleeves and the "training" session (which the trainer arranged for next Saturday... seriously?? the weekend?? Is it not enough that all of this stuff consumes my week?!? ugh) for the compression contraption. BUT... as Sarah Young so eloquently puts it...

"Thank Me for this day of life, recognizing that it is a precious, unrepeatable gift... Resist your tendency to search for the easiest route through the day. Be willing to follow wherever I lead."

We are falling into a crazy radiation-induced routine that revolves around getting Dryden & Parker to school and Neely either home or at Grandma's. It leaves little time for my usual errands and chores but I guess that just means that I rearrange my afternoons. It is not insurmountable and probably really good for my sometimes strict type A tendencies. I do feel like I've been pretty irritable with the kids and I'm not even really sure why... It makes me extra sad because I feel like I should be cherishing every moment (all the time, every day, for any reason... that is a tough one to live up to, I'm finding!).

Dryden is trying to find reasons to stay home from school to play legos these days. Parker just picked up his Sidney Crosby/Reebok hockey equipment and is dying to get started. Neely is just wishing that someone would sign her up for something but for now she has to make do with the Dora roller skates and trips to the rink for everyone else! It is already time for Spring soccer sign up and I can see the direction that our life is beginning to take... Lord, keep us grounded in You!!

Ok, I'm running out of time here but wanted to just let all of you know how much I appreciate your ongoing prayers and everyone's concerns after my pathetic posting last week... It was a very difficult week but we are getting back on our feet!

Radiation

First let me say that I apologize for not keeping everyone "informed" as was the actual initial intent of this blog. Even my own mother had to call and say, "so did you start radiation or not??". Not cool... However, it would be a drastic understatement to say that this week has been hard. Maybe the hardest one of cancer?? (beyond accepting that it WAS cancer, of course) There are so many reasons why and probably a lot of them would sound like whining or ungratefulness for the advances made in treatments, etc. But... here it goes... Monday I went for my final "planning" session for radiation - they need to obviously be extremely careful about the angles of the treatment in order to spare my heart & lung function. They made their final two tattoos of four total. Yes, the tattoos are tiny black dots but on a very fair-skinned white girl they are obvious and visible in most t-shirts and likely any bathing suit. For me, it is just another constant reminder... which may turn out to be one of God's purposes. Then it was off to learn more about the Flexitouch massage contraption at my physical therapist's office. Everyone was so nice and caring but by the 80th time that the Flexitouch rep repeated how lucky we are to have this technology I almost screamed from my supine position confined in several velcro compression compartments that literally run from right above my right knee to my chin: "Well please forgive me if I am not feeling very LUCKY right now!!". As much as I know in my head that I should be appreciative of the advances in lymphedema research, I am having a very hard time accepting that this is something that I am going to have to deal with on a daily basis for the rest of my life. I still have no idea where I am going to find an hour a day to lay perfectly still. They kept telling me how I can just put it on at bedtime and fall asleep, later waking up to take it off. Really?? I can strap myself into a ridiculous amount of hot, synthetic material attached by copious amounts of velcro and then just drift happily off to sleep?Apparently none of these people have tried this nor are any of them experiencing the kind of chemically induced hot flashes or night sweats that I am! Sounds like a very restful experience... Needless to say, I'm really struggling with this and adding the daily trek to be radiated has just left me emotionally raw. Each day I kept trying to feel better until I just decided that I would allow myself to be angry for this whole week. So... here I am... angry, sad, frustrated and feeling like it never ends. Today, I am not only meeting with the compression sleeve representative (another lovely daily reminder...) but I am finally supposed to go to the dermatologist for the "thing" that has been on my shoulder since several weeks before Halloween. All in 5 beautiful inches of new snow, fun!

If you have called, emailed or made some other such friendly and compassionate gesture, this is why you haven't heard from me. I don't really trust my responses right now (as Kelly found out in an unavoidable phone conversation... I'm so sorry Kelly!!). If you ask me how I'm doing, I just might tell you and then later I won't be very proud of my outburst. So, I'm keeping to myself until I feel like I am better able to be the master of my tongue and emotions.


I looked up these verses (which I should probably commit to memory because my tongue runs wild too much of the time...) to help me with my issues...

When words are many, sin is not absent, but he who holds his tongue is wise. Proverbs 10:19

Set a guard over my mouth, O LORD; keep watch over the door of my lips. Psalm 141:3

Do not be quick with your mouth, do not be hasty in your heart to utter anything before God. God is in heaven and you are on earth, so let your words be few. Ecclesiastes 5:2


In the midst of all of my inner angst, I kept hearing that still small voice saying, "devotional". Because when you are angry you don't generally spend a lot of quiet time in the presence of the Lord (then you might be forced to give up your anger and I have been clinging to mine...) and I have certainly been neglecting that area of my life. I finally opened it this morning and of course, saw the words that God has been trying to gently remind me of all week long...

"Hope in Me, and you will be protected from depression and self-pity. Hope is like a golden cord connecting you to heaven. The more you cling to this cord, the more I bear the weight of your burdens; thus, you are lightened. Heaviness is not of My Kingdom. Cling to hope, and My rays of Light will reach you through the darkness."

Help me to Hope in You Lord... my strength is gone and my outlook is dreary. Give me Your light and help me to claim Your promises.

p.s. I guess that I failed to mention that radiation started in earnest on Tuesday and I am now going every day between here and sometime towards the end of February. I've been in such a funk that I haven't even asked any questions... like, number of treatments, what side effects to count on, etc. etc. I'm hoping that will come along next week when I take a break from feeling sorry for myself and my hope is renewed!