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Wednesday, September 23, 2009

Sept. 23 update

Had chemo today and had my last yoga class for this session. One was more enjoyable than the other...wanna guess?

The chemo infusion isn't bad. It's boring. It makes for a long day. I first have an appointment with the onco. I heart Dr. Mohamad. She rocks. I'm not so keen on her intern. I heart the intern's student doctor, Katie. Katie will make a great doctor. She remembered me, my case, my meds, my occupation, my family. The intern? Not so much. I got to her office at 9:30 and walked out of chemo at 4:15.

So, here's a lesson childbirth taught me: don't get excited about progress until someone tells you the progress you have made. Don't just imagine how far you are. I seem to make a lot of comparisons here to cancer and pregnancy/childbirth. There ARE a lot of similarities.

When I was in labor with each child (I have never claimed to learn things quickly), I'd be jumping all over my midwives to check my progress (regardless of what was in my birth plan), certain that I was "almost there." And each and every time (well, except for Aidan, where I was never checked until I was pushing...so maybe I just forgot that when it came to Tynan), the news wasn't good. I'd be thinking....gotta be close to 7 and hear "You are at 3" and I'd immediately feel my heart sink and get discouraged. To be honest, I never let that interfere for long, but I also hate that heart sinking feeling.

I've decided to avoid that as much as possible with this whole cancer thing. I have at least learned that I'm not in control (as much as I hate accepting that, but were I in control, I'd not be in this space on life's spiral). Therefore, I'm not at all palpating the tumors. I so do not want to think, "Awesome! Smaller" only to hear differently from the doctor. This has resulted in my going in cold to see Dr. Mohamad the last two visits (before chemo two and today, before chemo three).

Today she walked in and asked if I had good news for her...was it smaller. I told her I wanted to believe so, but she was the expert. She palpated, and palpated, and palpated and announced that she could feel nothing. Now, this woman has felt up a lot of boobies, so if she can't feel either tumor, then they are too small to be felt.

Even she seemed surprised that they had shrunk so much, so fast. She even said, "I was thinking that you'd only had two treatments. Did I lose one or two?" Nope. It's working and working fast.

I understand that it is mostly the medicine. Breast cancer has a lot of research behind it and mine is "garden variety." It's not a tricky treatment. Long. Still have months to go...several surgeries and 8 weeks of radiation...but it's pretty basic stuff.

Yet, I've also been working hard. I'm a natural night owl. But for two months now, I've been going to be most nights by 11:00 or earlier. I'd go even earlier, but if I'm to sleep more than a couple of hours, I need to take my pills no earlier than 10:00. Otherwise, I wake up at 4:00 and can't go back to sleep. Or I hear Louis when he gets up at 4:30 or 5:00 (or 2:00 on Thursdays) and can't go back to sleep. No pills before 10:00. Learned that lesson. It's hard for me to give up my late nights. It's taking me weeks to finish books, for instance. No more late night chats with West Coast friends and other night owls. No more late night weekend nights. Didn't close down the Swamp Fest this year.

Doing Focused Visualization has also been a hurdle. I've got a very typical ADHD neurology. My brain skips around (as anyone who has had conversation with me should have realized by now). It's hard for me to not be making my grocery list, talking to myself, creating stories, fretting about the kids, planning lessons ( I seem to be able to visualize my classes fairly well, sadly). For the last six weeks, I've been trying to spend 30 minutes a day, in fits and starts, visualizing pacman eating my cancer. It shouldn't make me grit my teeth, but it does. It's reallly hard for me.

I just finished six weeks of yoga classes. That was a huge stretch for me (who knows what to do with that pun). Going into something physical, doing something I'm not good at, something that reminds me constantly of how old I am and how much I'm not that young person I used to be, not that person in my head. Even worse is hearing stuff like "Root down, open your hips, flower your buttocks, shoulder blades on back..." and thinking "What the fuck? Root what where? What the does a flowered buttock look like? Good thing I'm in the back..." I still don't understand half of what I"m asked to do. I fake it; I also love it. My teacher is awesome and definitely worth the drive to Monclova. Thank you, Amy for the suggestion and encouragement.

I'd like to say I haven't changed my diet significantly, but in actuality I have. I'm doing what I know I should do, and doing it much more diligently. I've nearly totally cut out all refined sugar and flour and other carbs. I'm doing (and it really does feel like taking medication or something) 10 servings or more of veggies and fruits a day, on the "good weeks." No one needs to know what I eat in the 5 days after chemo. If it sounds good, it goes in. So far that technique (and a lot of zofran) has kept nausea at bay for the most part. Having lost half my taste buds has also helped in a way...for the first time in my life, when I'm full, I can easily stop eating because I reallly don't taste much of the food any more. I even threw half an apple away today, and ate only one bite of the cookies that were dropped off today.

Some of the hardest work I've had to do is accepting help from others. I have the best, most caring group of friends in BG. And another group of awesome friends on line. In fact, I've been friends with some of the online people longer than many of my real life friends. Some of us met up online in 1995, when Aidan, now a freshman in high school, was a nonstop nursing babe in arms. My real life friends have formed this wonderful "meals on wheels" posse. I haven't had to do much thinking about what to feed the family for weeks. I normally love cooking for my family, especially at this time of the year. However, I never really realized how much time and energy doing so requires. The mental energy alone...reading ads, making menus, preparing lists, remembering to actually cook, juggling meal times and soccer practices and games and travel and teaching and and and and...the meals we've been getting have been 100% awesome and more helpful at keeping this family going than I can even verbalize. Having that extra time and energy means we can actually spend time as a family. Having that extra time and energy means I can do my exercise or visualization. Having meals provided for us means that I can focus on me. And it's been a long time since I've been able to say, "I'm going to go sit out in the yard and feel the sun" just because I want to do that.

But at the same time, accepting help like this, for so long, from so many people has been really hard. I don't know why, really. I've done the same for others. In the midst of this, I took a meal to another family that is dealing with a cancer recurrence, another family with a mom with cancer and a teenage son. It just seems unfair...they've already gone through this. So I dropped off one of the freezer meals we have in our freezer. I've taken many meals to families with new babies over the years. Sometimes just Subway or ordered in pizza, but meals nonetheless. I've taken care of other people's kids when they were sick, helped clean their houses, done their laundry. Yet, it's still very hard for me to realize that I need this help I'm getting and it can reduce me to tears to think about how much harder life would be if it weren't happening. We'd be up the proverbial creek, especially given my husband's crappy, stressful and exhausting current job situation, not to mention his 24/7 pain from the torn ligament in his ankle. Graciously accepting help has been hard. But I"m getting better at it.

The help with house cleaning has been another hurdle for me. To have people come into my house and see the clutter and mess we live in...ugh. Actually, we've been doing much better since we got rid of so many possessions over the past two years. Right now, it's just boy/man space that is the clutter/disaster of our past. Having older kids makes a difference, but my kids seem incapable of not making messes just by breathing. Heck, all five of us have that issue. Have you seen my office? Yet, because our house is cleaner than it has ever been, it also seems indulgent to have the "Cleaning for a Cure" posse coming in the day after chemo, and to know they were willing to do it more frequently seems really indulgent. However, last time, walking into a sparkling house after work that day was AWESOME! Oh my gosh.

Finally, but not the last (it's just time to stop writing...Nathan has informed me my blog entries are so long he can't read them...I just think that he's jealous) is that I've been getting up and exercising in the mornings. Along with being a night owl, I'm also not a morning person. Mornings suck. They are painful. Rise and shine should not take place prior to 9:00 a.m. "Business Hours" should start at 10:00 a.m. Classes should not meet prior to that time, either. But instead I'm out there walking by 6:30 every morning lately (or I was until the stupid blisters today). And then I do it again later in the day. I hate exercise for the hate of exercise. Never have liked it much. I don't mind climbing a mountain. I hate walking in circles. But I'm doing it. Supposedly it gives me more energy. There are studies that show that exercise reduces cancer recurrence, and I want to do whatever I can to make my body the most inhospitable place for cancer ever. Plus, I also hate this feeling of being a patient. It's horrible. When the cancer thing is finished, I don't want to segue into being a heart patient or something. Plus, I can control exercise. It's one thing I can control. But ARGH, I don't like it.

Silver lining to all of this? There are approximately five days out of each three week cycle that I feel "normal" or truly good. And I think this past cycle, I felt better than I did before starting all this crap.

Ultimately, while the chemo is doing the vast majority of the work, I'm working hard, hard, hard to help it. And to be honest, it will make my life better in the long run (pun intended). At the same time, this is waaaaay more exhausting and time consuming than I might ever have imagined. I saw a shirt that says "If I'd known how time consuming cancer is, I wouldn't have gotten it." Ain't that the truth. It's all consuming.

14 comments:

Anonymous said...

GO DAWN!!!

MacBump said...

Dawn, you inspire me. :-) You are so upbeat sounding...kudos to you!

Ayala said...

no words. you are fierce in all the best ways. sending love and light and respect and awe.

Theresa Williams said...

Another very good read, Dawn. Thank you for sharing your experience with us.

Piepiepie said...

You actually share a lot of great ideas about how to live without cancer too. I am going to reread this a few more times and ponder it (and laugh at your thoughts about yoga--I can so hear you saying all this, and I too have a love-WTF relationship with yoga). I am so glad you are doing so well in spite of the huge challenges and making such major strides.

I sure wish I lived nearby. Among other things, I would get up in the morning and walk with you in a show of solidarity. Well, maybe once a week. :-)

Amy Kagey said...

Dawn,
You are simply an inspiration to me and help me to feel thankful for only my petty complaints. You are in my thoughts often.

Anonymous said...

Dawn, Something I found in a much less serious situation,is accepting people coming in to clean or bring meals means accepting that they love you. And you ARE loved greatly, Dawn!!

Keep fighting the good fight!

Lois

Anonymous said...

Dawn your in my thoughts, another excellent blog thank you for sharing. Love and strength to you all. The Murphys

Danie said...

I love learning your perspectives on all of this. I don't know how I'd be in similar circumstances, but I hope I'd at least be able to verbalize my feelings as well as you do.

laura bz said...

Dawn,
Wow so much wonderful news. You are such an inspiration...for real. love!!!

Katherine said...

Produce Produce all around! I'm inspired by all of the action you're taking. You're totally rockin' it Dawn.

Anna V said...

I know it can be so hard to accept the help but you really are getting back what you put out to the world in earlier times I reckon.
I struggled a lot with having a cleaner too. I remember starting a thread on sah-ap about it actually.
It all sounds positive :)

Theresa Williams said...

Dawn, I'm sharing with you a collage I did after my surgery back in 2002 as a way of dealing with the changes in my body. I took a lot from Kahlo in terms of the way she dealt with physical pain. The fire is meant to be positive: it means burning the old frightened self and rising again. http://theresawilliams.wordpress.com/category/art-collages/page/2/

char said...

You rock, Dawn and obviously, as one comment above puts it, all the help shows how loved you are by so many. Keep on inspiring the rest of us!