Bandaging the Swollen Paw

Week One is history. A sweaty, sizzling heat wave rolled into the Bay Area and settled on top of my swaddled arm for the duration. My, this has been challenging. Doable in a time-consuming, claustrophobic sort of way.

I booked the crack-o-dawn appointments in physical therapy mostly because I'd get in and out before the kids needed to be picked up at school. This means I'm driving to the hospital at 6:45 am, getting unwrapped and measured, and in the shower before the lymphatic massage (sounds better than it is) and rewrapping. The shower is the best part of the experience. No bandage, no arm or finger constriction. You know how much you love that first hot shower after a camping trip? Well, this is better.

The bandaging has something of a steep learning curve, at least for the memory-impaired. Consider that there are two rolls of gauze-like webbing to wrap the fingers and wrist; an arm net; a ribbed pad over the back of the hand for added compression; a fuzzy cotton wrap like quilt batting from palm to armpit; and a series of three ace bandage-like bandages for the hand, wrist and arm. All require different techniques, directions, start and end points, tension. As you'd guess, the result is massive bulk of the scary medical kind. During a heat wave it is tough to disguise the bandaging; I went with the casual, business-as-usual approach. A few people, including the kids' friends, asked questions. Mostly I settled on an easy, "Oh, just some swelling. The bandages help it go away." Those who wanted more learned it was lymphedema and a few excessively curious moms at a t-ball game discovered that Danny's mom had breast cancer.

I've noticed that every time something new and visible related to cancer happens to me, the kids regress. Arguing increases, meltdowns occur over little things, anger erupts in hot spurts. It's happened enough that I've come to expect it. If the good that has come from this disease is a Cancer Perk then these horrible family side-effects shall be christened Cancer Crap. It does no good to hide the disease from anyone; those who love you will always feel its power. I hate the Cancer Crap but my kids will learn how to wade through it and leave it behind. That, I think, will one day be a Cancer Perk.

Hedgie is Back!
The heat wave gave me permission to return to my short, short hair style, the one I had when my hair was growing in after chemo. I was one of the few women post-treatment who liked their first hair. The growing-it-long-again hair drove me nuts. Well, Hedgie is edgie once again. Wash, gel and go.

Goldfish Emergency, What Else?
On top of everything else, Pooh and Tigger, my dear Comets (handed off to us four years ago at a church festival by their rightful teenage guardians) became terribly ill following a medication and tank treatment. Good thing we have multiple tanks and healthy fish; juggled the big goldies around until I could set up a safe tank for them. It was touch and go but at this point it looks like they have recovered. I still need to re-establish the original tank for them but at least I don't have to do so at a frantic pace with a bandaged hand further encased in a plastic glove on the hottest day of the YEAR! (I really think Pooh and Tigger are living metaphors for something else... haven't worked it out entirely yet.)

Mummy Arm on Monday

The threshold has been crossed. I'm there: Stage 2 lymphedema. The therapist says it's early and we may have caught it in time for the bandaging, massage and self-care to prevent further progression. What's the cause? She thinks the DIEP surgery stirred things up, the flu and complications, plus life, simply overwhelmed my lymphatic system and it shut down. A complication from any surgery that removes lymph nodes, lymphedema is a chronic and potentially life-threatening disease. Yet another Cancer Gift I've yet to develop a Cancer Perk for.

The two week intensive therapy involves an early morning appointment at the Lymphedema Clinic where I will have the opportunity to shower. The Lymphedema Therapist (there's a special training program for this specialty) performs the massage that will move the excess fluid through the lymph system and "teach" the system the new pathway since there are missing nodes. After that, my left arm, hand and fingers will be bandaged with the compression bandages. I'll be taught this method so I can perform it myself in the future. The bandages will remain in place for 23 hours. When I return the next morning, the aides will remove the bandages, I'll shower, and the routine begins again. This goes on for two weeks; I'm not sure what happens over the weekends/holidays. Thinking about being bandaged for 2-3 days is too much. I'm sure they'll let me wear the basic sleeve and glove.

Tiffany, my therapist (one of the ones I had a year ago when I was just borderline), told me that if I'm lucky I'll be able to leave the clinic treatment and do the compression bandages at night, with the self-massage and compression sleeve for daytime treatment for perhaps several years if my lymphatic system kicks back in. Go ahead and adjust your glasses. Several years. The luck here is that if lymphedema progresses, then the heavy-duty bandaging becomes a permanent way of life, infections and tissue damage a constant threat. There's even a cancer related to lymphedema. (Isn't there a cancer for everything?)

In the grand scheme of things I suppose this isn't the worst that could happen. Took me a day and a lot of sleep to get my head wrapped around the idea but as they say in trendy-speak, "it is what it is." Here's what I'm wondering.

How do I explain to people what is going on with my paw? My monstrous wrapped arm? Shall I use the occasion to educate the poor unsuspecting folks about the never-ending nature of breast cancer treatment and survival? Or joke about being stung by a bee? There may be some people unaware of the cancer diagnosis; how I hate to ruin their day with the announcement.

Anyone who has faced a similar experience, advice please.

Ode to Nordstrom

It's not what you think. Forget the shoes, I'm paying homage to the women in the lingerie department. The ones trained as "fit experts" for travelers on the breast cancer express.

Twice I've made the journey to the third floor of the nearby mall for help with bras. The first time was shortly after the mastectomies when the plastic surgeon advised me to find a gentle compression bra to use while undergoing "expansion." Turns out I only used the little bandeau beauties (think elastic bands) for a month before surrendering to the bliss of camisoles and nothing-at-all, since there was little need for support of any kind. The memory I have from the Nordstrom fitter, certified and trained to be absolutely nonplussed in the presence of mutilated mammary glands, was how utterly professional and kind the woman was. No pity, no sadness. I felt petite, not flat-chested. She was gifted, that sales woman.

Today I decided it was time to support The Girls. Ms. Choy was my guide back to the new world I'm living in. She did not blink when my scarred skin was exposed. Instead, she found exactly the right fit for me. Pretty, feminine. Real bras. I'd forgotten what it was like to buy lingerie. Goodbye, camisoles, love you though I do.

Here's to Nordstom, the best place I know for women post-mastectomy to visit when looking for a little "lift."

She's Alive! A Little Pale, But Alive!

Wow, has it really been nearly three months since I've visited my own blogdom? Goes to show how out of it I've been. A little surgery/flu/sinusitis/bronchitis/exhaustion will do that to a gal. The immune system ain't what he used to be.

Just placed an order for a lymphedema gauntlet. What a fitting term for it. Throw down the gauntlet I will! Damn swelling has my left hand the size of a puffer fish in full puff. It's been a week and the pain is less now; I won't be able to see the lymphedema clinic folks until mid-May so I'm on my own. Between the lymphatic massage I was taught last time, the new sleeve I purchased this week and the gauntlet (to replace the Isotoner glove I was using for compression), plus acupuncture treatments, maybe I can get the swelling down somewhat. What caused it? Who knows. Stress of being ill, poor sleep. Maybe it was trying the new softball mitt out with the kids. Dang. I hope that wasn't it. A new low: "Cancer kills softball with the kids."

The DIEP surgery went very well, as did my recovery. Took a lot of steam out of me, obviously, but no serious complications. The result, or results, are okay. I still feel the pressure under the pectoral muscles but I guess that is no surprise. At least now there is softness on top, and hugs are squishy. There will be another surgery (a revision) but it should be minor, perhaps even outpatient. After that, nub creation. Last, but not least, tattoos! Thought this would involve a trip to a seedy tattoo parlour but a friend tells me she went to a woman who specializes in tattoos for BC reconstructions. Drat. Maybe she'll give me a hummingbird on my tush for free. Thinking about August or September for the revision...

I've come to realize this spring that I may have rushed into acting 100% before I was ready. There is a lot of unspoken pressure to be well, to participate in activities as though everything is normal. Heck, I want to be normal. I don't have the stamina to pull it off, though. My memory isn't there (ask the poor mom who carpools with me) and the energy to get through the day leaves before the sun does. I know that people are tired of hearing The Excuse. I'm beyond caring, most of the time anyway. What's difficult is being with new groups and feeling absolutely worthless as a contributing member. I know why my kids miss practices, or why we're late for games, or why I don't volunteer to toss the ball with the team. What's the etiquette for explaining to people that you're spacey because of chemo? Tired because you haven't recovered your stamina following cancer treatment? In pain with swelling due to lymph node dissection? Of course I don't want to whine about any of this but then what do I say? I'm lazy? I forgot? I don't like to play sports?

Where's the user manual for this part of the game?

HMO Moves a Molehill for Me

Insurance companies have been known to be villains in medical dramas. Who hasn't spent hours chasing down referrals, checking the status of authorizations, filling out claims forms and punching their way through the voice mail menu at the customer "service" center? I've been a member of HealthNet HMO since 1988. I've jumped through hoops for them over the years but have always been able to receive coverage for the services needed. Okay, maybe a few exceptions but they've come through with the big items.

Today, it was the Medical Group that screwed up and pushed me to tears. HealthNet and most insurance companies get such a bad rap that I want to say they were the White Knights today. They made up the three weeks delay caused by the Medical Group in less than an hour, approving an out-of-network second-opinion visit to an oncologist of my choice for case and treatment review.

The Medical Group sent me a letter several weeks ago telling me they had faxed the information to HealthNet for review. When I followed up today, realizing that silence is never golden when it comes to insurance, I learned that the phone number listed in the letter connected me to the Alabama Department of Agriculture. Not HealthNet. (Off by one pretty important digit.) And the Medical Group had sent me the wrong form letter to begin with; I was supposed to get the one telling me follow up with HealthNet and get my own information faxed. Or something. End result: HealthNet had received nothing.

Well, the urgency to the matter is that on Monday morning at 10:00 I have the second opinion appointment. If it isn't preauthorized we're responsible for the $500. Maybe HealthNet would reimburse us, maybe not. On Wednesday we take the second opinion to the New Patient appointment with my new, improved Agent of Doom. These appointments all require supporting childcare, husband work rescheduling, records gathering. At 4:30 pm today it looked like the calls back and forth between the Medical Group and HealthNet would get me an answer by Wednesday of next week. Too little, waaay too late. Oh, that's all it took to get the tears flowing.

No one heard me crying. I pulled it together between phone calls. The customer service folks were actually kind, something I've noticed now that "oncology" shows up next to my requests. And when the HealthNet folks understood the issue they reviewed the request while I was on the phone and two of them gave me the news on a conference call. I mean, wipe me up off the floor and tuck me into bed.

I guess it says a lot about our health care system that getting a "yes" from an insurance company in a reasonable time frame, with respect and kindness shown to the individual, is news. Forget that I had to spend the day chasing the "yes" down. It is still a "yes" and one I am grateful to have received. Go, HealthNet. Be kind to the little cancer chicks.

Fiestaware!

Another Cancer Perk arrived via UPS on Monday. A chubby box stuffed with ceramic dishes bearing "made in the USA" on their darling behinds. Bright colors. Peacock. Tangerine. Scarlet. Emerald. Oooh. Ahhhh. Fiestaware!

Okay, the uninitiated might wonder how Fiestaware China (unleaded, never had it, never will) can be considered an authentic Cancer Perk. Fiestaware resists chips. Is known to survive falls from counter to kitchen floor. The darn things actually come with a 3-year-warranty for pete's sake. Another plus is that they are microwave-safe plus come in heartlifting colors. Fun to collect. Once my dish dropping became a daily routine courtesy of Aromasin (numb fingers can't grip much of anything) I decided it would make sense to invest in some hardworking-yet-inexpensive dishes. So without these clunky fingers from chemo and hormone therapy I'd never have been able to justify new dinnerware. Voila! Cancer Perk.

I'll let you know what happens when the first dish hits the hardwood floor.

Unexpected Event of the Day:
One of my favorite blogs, A Woman of Many Parts, listed this site as one of her Reads. Minerva is most kind, and I send her some California sunshine in return.
Just as soon as it stops raining.

Cancer-Free Post

Hope is where you find it, and sometimes it all depends on where you look.

A product of a mixed marriage (Dad was a Republican, Mom a Democrat), I sided with Mom in nearly all matters political. After all, when she was organizing League of Women Voter committees through kitchen table meetings and phone calls who do you think was listening to every word? Despite leaving Illinois for California I've kept an eye on current players from the home state. Back in 2004 I ordered an Obama for President 2008 sweatshirt from Cafe Express. Never, ever anticipated that he would run so early. As he would say, I had the audacity of hope.

During the past few years this sweatshirt would often bring a "yeah, wouldn't that be great" remark from strangers or even "who's Obama?" from the unenlightened few. Now when I reach for the sweatshirt I pause, knowing that I'll be stopped for political discussions. Do I have the time? Am I dressed for discourse or really beyond repair, hoping to sneak by without notice? Should I slink back into longshot candidate attire and wear my Anderson for President t-shirt instead? Get this: Obama is no longer a long-shot candidate. Mom, are you watching this?

Today, in light of the Kennedy endorsements, a reminder of the moment when the possibility of change became more than a dream. If you missed it the first time, read the words now. Powerful. Hopeful.

If you want you can order an Obama shirt off the site while you're there. Most are backordered but, unlike Cafe Express, anything purchased goes into the campaign.

Go on, get a shirt. The red ones are totally hot.

Crazymaking stuff, that Aromasin. At least for me. Everyday I've been circling nearer and nearer the surface, shedding layers of gear, hoping to break the surface. Me, a hapless scubadiver in a sea of chemicals. I stopped taking this last drug December 26 after only 26 days of a proposed 5-year-run. The side-effects are still with me although less now. Every day my brain is clearer, my thoughts more focussed, my ability to stroke through the rip-tide of a medical wonder drug more sustained. The numbness, pain and heaviness of my hands have lessoned but not enough; I'm wearing carpal tunnel wrist braces to bed. I'm starting a Fiestaware collection, always wanted one, to replace all the dishes I've dropped recently. (Did you know that these dishes are guaranteed against chipping and breakage for 3 years? Wonder if I can get a guarantee like that.)

Not sure what I'm going to do for estrogen-stoppage. Maybe I'll bail out of this part of the program completely, or return to Tamoxifen. That one was nasty, too, though, with a kind of fatigue that made me question what I was getting up everyday for, anyway. The body does need some estrogen to function, afterall. This concept of "kill the tumor by killing estrogen" might be a tad overkill if you ask me. So far no one is asking. It's been a problem.

There's a lot of good going on. Dear friend Mot is journeying out from the frozen midland of Wisconsin for a vacation in the chilled coastal territory fondly known as Northern California. We'll play tourist, have quiet time and just pal around.

February will take me to yet another oncologist in San Francisco for a treatment plan review. Afterwards, I'll be returning to my same practice (no choice there, really, thanks to our lovely health care system) but I will be seeing a different Agent of Doom. This one is older, considered a "brilliant mind" and perhaps more able to communicate directly with patients than my current young doc. Both steps are huge for me, and long overdue. Being an advocate for oneself is hella hard.

The survivor support group for women I've searched for is finally happening. We've created one for ourselves with a therapist, retired now, from Stanford. Four women with different cancer diagnoses, backgrounds and intents will gather in a cozy church parlour for love, knowledge, friendship and support. Yahoo. You would think one of our hospitals or cancer care centers on the San Francisco Peninsula would offer a support group for cancer survivors, right? We see their lips moving but nothing much happening.

At the end of February I will begin the "end" of my surgical program. I'm scheduled for DIEP reconstruction. The reality of the surgery is pumping tension directly into a few muscles along my neck. You know, the ones that make it impossible to move your head right or left? Besides worrying about the pain, 7-week recovery and whether I'll have anything at all to show for the effort except thick scars and a flat chest, I'm stressing about the kids. Joe will be home but it will be disruptive for everyone to have me unwell. Hospital time, then resting at home. More evidence to them that their mom isn't well. And yet, I want to finish this up, get as much of my real body back as I can. For me, that means flipping my finger at being "less than" and asking for "real breasts." Okay, they'll be made of tummy fat but it's my tummy fat! No implants, no silicone, no apologies. After 19 months of camisoles I'd like the discomfort of a bra again. Slipping straps. Yes, I'm more than a pair of tits. I don't have to prove it. I would like to have soft, natural breasts to fill out a sweater, bounce when I walk the dog, cushion my children's heads, and be squishy when I hug. I like to hug. Lately, I've been keeping everyone at arm's length - literally - because it hurts when the psuedo-breasts (expanders) are pressed.

So, I guess I really am ready.