Monday, January 11, 2010

a new 'normal'?

Well today was another pretty bad day.

Rachel woke me at 630, which was actually a good thing. However, after I'd fed her, changed her, etc she wouldn't go back to sleep. She'd let me get all comfy & cozy back in bed, then scream again. I'd get up, give her the pacifier, and pat her a bit before going back to bed. Just as soon as I'd get comfortable, she'd scream again. I tried to ignore her, but I could tell it was going to escalate until Andrew & Simon woke up too. So I got back up, repeated the process at least 4 times total. Finally, I'm ashamed to admit I cussed her out soundly & picked her up & held her until she went to sleep.

When I finally got up again it was, of course, time to feed her again. Then we had to get ready for our trip to town for my blood work. No problems getting ready - except that is always when she decides she has to do a doozy of a doodie. We finally got ready and headed out the door w/ mom.

We waited at the doctor's office for a while. I got my blood tested & then I met a 'fan' of mine. She has cancer as well & is on chemo treatment 8 of 12. She also has Parkinson's Disease. She must have read and/or watched our story repeatedly b/c she could tell me (and her daughter who was with her) everything about Rachel & me. She was a sweet lady. OK - so that was a good thing I'll admit.

However, when I spoke to Dr. M about my fingers & toes, he told me that we're going to most likely have to discontinue my chemo. Note: while that sounds like a good thing on the surface, its really not. Stopping the proscribed number of chemo treatments means there's a chance (albeit a small one) that there are still some cancer cells lurking somewhere. Even though my PET scan came back clear, it can't see very small cancers. Nor can it do anything about ones that hadn't shown up at that time. The reason for discontinuing the chemo is that apparently the Taxol is not only killing the cancer cells (we hope) it is also killing the nerves in my fingers & toes. Some of that cell death can (& may very well) be permanent. While mine hasn't gotten to the point of me being unable to fasten buttons, there is still a while for it to continue developing. As I type I have tingling pain in my finger tips for the most part, but it seems to me that the feeling in my right hand is more on the numb side. I noticed when I got home that I had a very serious dent & scrape on my left little toe that I absolutely cannot feel. Not only is that scary in the normal sense - ie w/ a perfect immune system and a graceful body; it is also doubly scary w/ a lowered immune system (my WBC's were a little low this time) and a somewhat klutzy/careless body.

Since not continuing chemo is not necessarily a good thing for the cancer fighting end of this treatment, Dr. M is pushing that I have my surgery sooner. While I'm attached to my breasts in the normal sense (ie they're appendages I've grown quite used to having), I don't think I'm overly attached. However, something about having the majority of your chest whacked off is daunting to say the least. Not to mention the fact that they will be largely numb for the rest of my life. I've also got the added doubts in my mind that I will have enough extraneous tissue for a good reconstruction. I know most women will want to smack me at this point - so if you're feeling violent, please stop reading or at the very least take your violence out on a pillow or inanimate object - I don't have much belly fat even though I'm 6 weeks postpartum. Actually, by the scale I think I'm back to my normal weight already. I know I can wear my pre-pregnancy jeans & such already - although I do fill them out a bit more so they actually fit. I know that most women have continued reading this are saying, 'You can have some of mine - I'll gladly donate at least 5-10 lbs to build your boobs back.' However, sadly, this won't work for any of us. I do have the option of getting *really* fake breasts reconstructed, but that's just not really my style. Plus, since I'm quite young there is a high likelihood that I'll have to have them replaced a couple times in my lifetime. Definitely doesn't sound like a great idea to me.

Here's something else most people probably think I'm retarded to be bothered about... Its hard to be upbeat and "inspirational" all the time. Its also more than slightly embarrassing and heavy to feel like everyone has that expectation for you. Its not in my nature to break down in public & I really even try to avoid it in private. However, one of my biggest fears is to disappoint people. I didn't want my 15 minutes of fame, but I had it thrust upon me. It never occurred to me to do anything but follow the course I'm following. Looking back I wouldn't change anything really (unless I could get some magical means of preventing the cancer). However, just b/c I am upbeat & positive, I don't expect or want accolades or congratulations. I just want to be a normal person. I don't want to be labeled as that cancer survivor who was pregnant when diagnosed & going through chemo. I'd really have preferred to have stayed in the fringes of notice, blending in with everyone else. Not too smart, not too pretty, not too anything - just a little above average in some things, but not spectacular or even all that memorable at anything.

However, I have apparently done something in my attempt to survive as best I can that makes people take notice and get 'inspired'. I'm not sorry for it necessarily, but it does weigh heavily on my mind sometimes. For instance, what would the people who think I'm inspiring think if they *really* knew what was on my mind when I'm cracking bald jokes & cancer puns? Oh, I know you guys all know I'm human & have good & bad days, but sometimes when I have a *really* bad day I really wish I could not feel like I'm letting everyone down by feeling crushed by everything. Reading that makes it sound so dramatic & its not really. It just is what is.

I'm kind of feeling for George (?) from Its a Wonderful Life - I really don't think anyone would particularly notice if I weren't here or if I died now. I secretly hope that my husband would be terribly overcome and grief-stricken without me, but I'm realistic enough to know that he'd grieve, but he's very strong and a very good dad, so he'd push on for the kiddos and eventually they'd be just as well off without me as they are with me. If mom &/or dad are reading this they're probably shaking their heads and saying, "But we love her and we'd miss her so much." and some more. However, no one currently actually *needs* me to live. Rachel doesn't even need me specifically. As long as someone gives her formula, cuddles, diaper changes, etc she'll thrive. Simon has Andrew. Andrew is very self-sufficient. Mom & dad are, well, mom & dad.

Even if reading this shocks you, just think about any loved ones you've lost. Yes, you still miss them & you still wish they were alive. But you grew from their absence and have mended that spot in your heart that they occupied. It may still pain you at certain moments, but its not crippling. If your loss is recent it may feel crippling, but trust me, you will grow and learn to live your life fully without that certain someone. I've lost at least 2 very special people in my life. One, my nana (mom's mom) died from this same, terrible, genetic cancer I'm fighting. The other died from another type of cancer at a young age. I was devastated by both of those losses. I really didn't think I could go on - especially after that 2nd loss. I was fairly young for the 1st loss (about 12 I think), and in the way of children fairly quickly adapted to life without my nana. It changed me - probably more profoundly than anyone realized - including myself - but I'm still here & still living. The second loss took me longer to recover from. I suffered from all sorts of emotional and even physical ailments after his death for a number of years. I distanced myself from his family, who I loved, and from most things we did together. However, here I am, married w/ 2 kids, and living life as it comes to me. I have some regrets from those years after his death, but I did what I had to do to survive and given the chance I'd probably make the same choices.

We're all cogs in a big wheel that God controls. While together we make things run smoother, small absences here & there won't negatively affect the whole wheel. God built in lots of fail-safe's and redundancies in His wheel of life. I'm not saying we're not all necessary, but God knows how long our usefulness will last & has designed His system to adapt to these losses along the way. I don't know how long my usefulness will last since that's entirely God's bailiwick, but right now I feel I'm not of much use except to take up space. Perhaps things will change, but only if it is His will.

In a way I'm glad I've become an inspiration to people. It has helped me truly understand using my life as a living prayer. That's one of my favorite songs by Alison Kraus (I'm not sure if its hers originally or if she remade it), A Living Prayer. In it she asks that her life be a prayer. To me it sounds like a song Mary must have sung. As a matter of fact I'm not entirely sure that its not an oblique reference to scripture come to think of it. I think there's a scripture verse w/ a similar sentiment. However, its a good thought and one that we should all try to keep in the forefront of our minds. I'm trying, but sometimes (like now) I'm failing miserably. I'm pretty sure I'm looking back at the beach & only seeing one set of footprints. I know Who's they are, but I can't tell He's carrying me. Darn this human short-sightedness.


Wendy Smith, M.E. Office said...

Hey need to remember that as strong as you try to be and make others believe, you ARE human and you are scared. God has blessed you with so much and he isnt going to stop now. Your life has and will be a testimony to others. Your family and friends do NEED you. When you start feeling down remember this...FEAR IS BELIEVING WHAT SATAN SAYS. I have dealt with certain fears over the years and always refer back to this quote. As a matter of fact, it is posted on my desk at work as a reminder. Chin up. You are a strong, motivated woman.

Janine said...

Erika: I love that you are so human...I think this is what I have enjoyed about you from the minute I met you many years ago. It's ok to have those thoughts and to be 100% honest. I really enjoyed reading this blog entry. Continue being you, and don't let anything else change it! :) And those boobs will look great once they are done with 'em! :)

Krystal L. said...

Don't say that your family doesn't need you b/c they really do. It's okay to be down in the dumps, parts of your life are pretty sucky right now. But you are naturally upbeat and positive and at the end of it all you will continue to be. My prayers are for you. Just keep those babies as your inspiration to keep going! And don't keep it all inside! Let stuff out so you can feel better.

Total Pageviews

Smiling already at 2 weeks

Smiling already at 2 weeks
Rachel has been smiling as a response to other people since day one.

And two shall become one...

And two shall become one...
In 2006, Andrew & I became one before God and family! Shortly thereafter we became 3 with the birth of Simon in 2008... Then 4 with the addition of Rachel in 2009!

Erika's Miracle Journey Continues's Fan Box