More word gumbo

A few more things to put out there, not all of them good, but not all of them bad either:

– The world lost an IBC warrior this week, a friend to many in the IBC advocacy community.  Norma Greer, an IBC advocate in Arizona and a friend through the listservs, lost her battle this week.  She will be missed;

– Cancer yoga has been helpful beyond words to me.  I think I’ve finally become comfortable with my own skin, which is ironic, since there’s now so much less of it in places (and more of it in others!);

– I really enjoyed meeting Jen Ballantyne and her friends Meg and Bella this week, exchanging comments, and seeing pictures of her beautiful boy.  Some days, I think making new friends (and keeping old ones!) is what the blogosphere is all about;

– My skin is healing nicely; the scars are not bothersome at all.  Although there is a little swelling under my arms that I find ugly, I’m already shopping for a new swimsuit and summerwear;

– We went shopping today and it was actually fun;

– I keep reading and rereading this thought-provoking post from Bella at Beyond the Map.  The words echo in my mind:  Trust your body.  As I worry over my scars and feel the shame of extra skin and fat, as I check out reconstruction photos and recoil at the thought of my body needing such, as I wonder and worry about the future of this skin, I am thinking a lot about things like this, and wondering.  But I think she’s right.  Trust your body, it knows what it’s doing and it knows what it needs.  And so I will take my vitamins and eat my vegetables and not subject it to further surgery unless it will  help heal me;

– Someone asked today on the IBC support list whether all the pain, the trouble, the discomfort, the vomiting, the booblessness (no she didn’t!) was all worth it.  I say YES.  to all.  And the booblessness?  So far, it’s such a net positive.  Not even 3 weeks out, I feel great and light and carefree without the worry of recurrence in my breasts.  Such a good thing.  Not that it’s easy; it’s a terribly hard road, but IMO, sooooo worth it;

– If you’re getting a mastectomy, I’ve learned that you should stock up on the following:  soft cotton camisoles, big button down shirts, cocoa butter, aloe (if you’re going to be doing radiation afterwards), gauze bandage pads and tape, and spray deoderant.  I have never seen a list quite like this, but, trust me, it’s a good one.  It’s not easy to find spray deoderant anymore, by the way, but if you don’t at least try it, you’ll have to find someone else to apply the regular stuff to you every morning.  And that?  Gets old.  (While I’m sure Jess or Stimey could make a hiliarous blog post from this bullet, I’m just slightly embarrassed.  Ah well.  That’s why Oh, The Joys and Stimeyland are so much fun to visit!);

– Widget’s words to me tonight as I was putting him down, “I want to help you.  I want to help you with your work.”  When I told him I was starting to write a book about a NASA program that I used to work with, he said, “I want to write a book too!”  So look out, world!  It sounds like there’s a book about firefighters, planets, backhoes, dogs, and baby cats to be written someday!

– Oh, and Imstell asked recently whether I’m going to get breast reconstruction.  Nope.  I’ve decided not to.  And not just because it’s easier to do scans and such to catch recurrences early without reconstruction.  Not just because I can’t have any work done at all until after radiation, and I’m not a candidate for implants now for a number of reasons. Not even because the idea of transplanting belly fat, back muscle, or tush (as my three-year old and I call it) muscle to my chest doesn’t appeal to me.  I’m just not going to do it because I’m happy with myself right now.  I’m happy with my body the way it has to be right now, even if I am more than a little pear-shaped(!), and I’ll just have to get used to it.  Because that’s what the new normal is for me now;

– And it’s all about the new normal.

Next week, I go to meet with my medical oncologist, my radiation oncologist, my surgical oncologist, and my lymphodema prevention physical therapist.  Whew.  I guess I’m not done healing after all!  Soon, soon my body will be recovered.  Healing, I’m learning, can take even longer. 

But the end result may be better than any of us even imagined.

(Tomorrow, I’m giving away blog awards that came to me this week from Leanne and Robin.  Fun, fun, fun!)

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Chemo #13

The effects of Taxol are cumulative.  Although the dose of chemotherapy is always the same, as the weeks go on, it gets a little harder to take.  Every week, the resulting nausea is a little stronger.  Every week, the aches are a little more intense.  Every week, the bone pain is a little sharper and has spread a little further.  Every week, it gets a little harder to bear.

I’ve had a tough weekend.  It’s just been nausea, aches, and bone pain, but the intensity of all three have increased over the past few weeks in particular, and I’m losing my weekends entirely to the aftermath of chemo.  The nausea takes away my appetite, to the extent where I’m just not interested in food again until Tuesday, and then I have to be careful not to eat rich food after the week of crackers and peanut butter, or my stomach revolts.  The aches make me cranky and the bone pain makes me crabby.  Oh, and I should record here that neuropathy has set in and the ends of my fingers and toes have gone numb. 

All in all, it’s been a truly delightful way to spend the week/end.

But, then, this morning, I woke up to blue skies, white clouds, and a hint of snow in the air.  There was a promise of excitement about, and when I came home from cancer yoga, I took the (little) boys out for an afternoon of shopping and browsing at an independent book and toy store near us.  We had a lovely time, and then went out to dinner.

And tonight?  Tonight I am happier than I’ve been in days, as my boys sleep soundly upstairs, tired from a day out with their mommy, and I can check one more thing off my list.  For this morning, my letter to the editor appeared in the Washington Post.

Add to that a nomination for a November Perfect Post (for part 1 in the series on How To Help a Friend) from Miscellaneous Adventures of an Aussie Mum , and a fun review at Review Planet this morning (the HP Compact Printer — way cool, my friends), and I can go to bed tuly happy and satisfied with my day.

Wishing you the same….

Big Ways to Help

The last post wasn’t exactly complete.  There are, of course, other ways to help a friend with cancer, and I hope you’ll help me fill out the list in the comments to this and the other posts.  Already, there are some amazing comments about helping the spouse of a person with cancer and specific household help for the day after chemo.  Genius, guys, thanks! 

The most amazing help that I’ve personally experienced are all Big Deals, but I would be remiss in not recounting them here.  These take quite a bit of effort but can be done more easily in groups.  One friend can take the lead in organizing help — a great idea in any case, as there is SO MUCH going on when a person is newly diagnosed with cancer that offers to help can easily get lost in the shuffle.  A lifechanging event like a cancer diagnosis can feel like a whirlwind.  The person with cancer may not feel like accepting help at first (trust me on that), but later it may become necessary … or at least welcome.

One of the greatest gifts is organization.  Are you a listmaker?  Or good with spreadsheets?  Offer to organize the offers of help for the person with cancer.  If you’ve got a group of her friends that want to help, great!  If not, offer to respond to those other friends that contact her with offers of help and help them figure out what is most needed.  Remember, everyone will offer to help at first — but the effects of chemotherapy are cumulative, so the help may be most needed at the end when she is most tired.  (Not always true if, for instance, the chemo regimen changed like mine did.  But even the later Taxol treatments, gentler than the original AC doses, have been much harder than the first ones.  And the cumulative effects of the diagnosis alone do add up to tears and fears after weeks or months of living with cancer.)

The organizer can make a list of friends and their specific offers to help, spacing them out appropriately so that everyone doesn’t bring dinner all at once, for example.  Perhaps there’s a specific need that the person with cancer has, like driving her to chemo and sitting with her once a week.  That can be a big job for one friend but much easier for a group of people that can each spend a few hours once.  There are other long-term ideas that you can come up with.  Perhaps she needs help at the grocery store, if lifting and bending are difficult and her husband works long hours or has a big commute.  Perhaps she is having trouble making the bed because of the neuropathy in her fingers from Taxol or Taxotere.  Maybe one week she’s got really bad bruises from the IV and is having trouble with the baby.  The ideas are endless, but the thought is the same … keep her company, and keep yourselves sane … figure out a way to spread out the help because the weeks get long and cancer, unfortunately, has no quick fix.

These are the most amazing ways that my friends have helped me through this.  Each is a Big Deal, which is why I didn’t mention them in the last post.  The last thing a friend needs is guilt or overextension.  But if you have a group of friends or can organize one, these have been lifesavers:

• Team WhyMommy – a bunch of online friends and blogneighbors that get together to keep me company, especially on the low days, but most importantly EVERY day, just in case;
• MOMS Club support – they divvied me up and each mom took a week to take care of me.  Each Sunday, I get a call from a friend offering babysitting, shopping, cleaning, cooking, or company, and we set something up for the week.  (I’ve been lucky to only need babysitting, cooking, and company.  But God Bless Them for offering to clean.);
• Morning out – one of my mom friends babysits Widget each week while I go to yoga, giving me “permission” to spend a couple hours on myself.  I know I can truly relax in the darkened yoga room if my little Widget is out having an adventure with his friends and not missing me that much; and
• Chemo Fairies – every Thursday morning before chemo, one of the moms drops off a little gift bag filled with treats, mints, and happies to help me through the day.  It’s totally spoiling me, but and it’s made a huge difference in how I view Thursdays.  Although I dread getting up to go to chemo in the morning, I also know that friends are thinking of me and I’m NOT ALONE as I fight this beast.

Like I said, these are all Big Deals and commitments.  But they have made all the difference to me.

I’m off to chemo again this morning … number 12!  I’m in good spirits now, but it’s been a tough week this week and I’d appreciate a little company today.  I’ll be checking email/web … if you’ve got a minute and you’re so inclined, would you please leave me a comment to say hi?

Yoga nidra

A yoga nidra, or yoga sleep, is akin to a deep meditation or guided imagery session, at least for those of us that practice yoga recreationally. 

We did one at cancer yoga today.  After 20 minutes of healing stretches, we lay down on several layers of blankets and mats, propped our knees and wrists on blocks, and lay so still that our fingers and hands begin to tingle.  (Even those of us NOT taking taxotere chemotherapy!)  Eventually, we all relaxed into a state of calmness and drowsed in and out as our yoga teacher read a meditation.

They say that the relaxation is so complete that a half hour of yoga nidra is equivalent to three hours of sleep.  I’m not surprised.  Eight hours have passed, and I am still soooooooooooo relaxed. 

After the meditation was complete, our teacher gave a quick recap of the guided imagery that we had walked through.  First, we relaxed every part of our body, starting at the right shoulder, working our way down to the toes and back up to the left shoulder and neck.  Then we relaxed every part of our body alternating right and left sides.  Then we …

I have no idea what happened after that.  All I remember is the relaxing part, and then the yogi telling us that it was time to slowly wake ourselves up, wiggling first our little fingers and then our toes, and then stretching as we saw fit. 

Apparently, there was a whole meditation on a lotus flower growing at the base of our spine, blossoming and blooming, and so forth.  Apparently, the deep relaxation is a healing and calming relaxation.  Apparently, the subconscious is in control even if the conscious is so relaxed that we’re no longer aware of our bodies in the room.  Apparently, the benefits are so great that even if we believe that we’ve been sleeping, we’ve actually only been in deep meditation, and the benefits will last all day and perhaps beyond.

At this I gasped and said, “Really?  The last thing I remember is you telling us to relax each part of our body, and then waking up again.”

Our yogi looked up at me kindly and replied at once, “You?  You were asleep.”

Yeah, that sounds about right.  What mom of little ones wouldn’t fall asleep, given a dark room, a comfy spot, plenty of blankets, and a soothing bedtime story?