The Secret Lives of Cancer Survivors

I just came across this Article on Breast Cancer and the impact on womens’ sense of sexual wellness. The article uses phrases like “sexual problems” and I couldn’t help feeling like the author is about 24 years old, single and has no difficulty finding a date. Judging from her FaceBook profile, I’d say I was pretty darned close. Marissa, if you happen to see this, the 45 year old you will look back on this article and scold the twenty-something you for letting your youthful sense of immortality sneak in to this article. You wrote it like you’re talking about your grandmother. Then again, maybe you were… I should grant you that room for grace, as I don’t know you.

Nonetheless, the articles on this study show a number of things:

1. 7 of 10 breast cancer survivors see a negative change in their sex lives after the cancer.
2. Changed body image means that most cancer survivors feel less appealing. (Surveys of the survivors’ partners did not corroborate this, however).
3. The post cancer drugs (Tamoxifen seems to be one among them) are huge contributors to the loss of sexual interest.
4. Chemotherapy made the sexuality issue worse at a uniform rate across all patients, regardless of surgery type, etc.
5. Treating reduced sexual desire is done through counseling.

About 200,000 women are diagnosed with breast cancer every year in America, and more successful treatments are creating more survivors. In the United States, there are 2.4 million breast cancer survivors, many of whom will be facing the side effects.

I’ll spare you the specific details, but it’s safe to say that this cancer survivor partnership has experienced what this study is talking about.It’s very real.

Here’s the big “however'” thought, though…

Just being aware of what this study contains, C has become much more aware that she’s not alone in this battle. She has a list of things she “hates” about herself post-cancer. Many of them can be tied back to the issues on this study – body image concerns, physical changes, wanting to go back to who she used to be and being unable to reconnect with that person…

Knowing that she’s not alone, and that other members of the sisterhood are doing the same thing? It doesn’t make it better, but it does make it no longer about her specifically.

Separate from the Australian study mentioned above, here’s another resource from oncolink.com discussing how women react to their sexuality after cancer

Peace of Mind

We helped out some friends this weekend. Their rental house has a wonderfully landscaped yard, needing some of that springtime attention to help launch the yard on the right path for summer. But, 9 month-pregnant momma-to-be was in early stages of labor. This just would not do. So we went over to their house on Saturday and did the yard work with them. When we left, the grass was mowed and edged, lots of weeds had been pulled. Plants that didn’t survive the winter were removed; some replacements planted. Color spots from the nursery were put in the ground an hanger baskets, and all the winter accumulation of leaves and yard debris from all the storms was taken out. They were ready to enjoy the yard, while concentrating on the new arrival and the parade of family and friends that comes with the baby. They had a noticeably high level of peace-of-mind when we left.

That felt really, really good.

M’s rehearsals have gone well. They’re still on the fence as to whether she’s an understudy or a cast member. Regardless of which she ultimately is, this has already turned out well. We all have a good feeling about that.

R left on Sunday for Outdoor School. Six days of environmental awareness education along the Sandy River east of Portland. He’s going to have a blast. He might just come back a little disappointed once he realizes how much environmental awareness he already possesses.  Even if he’s a little disappointed, he’ll have the validation that he’s knowledgeable and increasingly expert.

The rest of the Typhoon spent Sunday working on our own house. Two different neighbors stopped to say ‘hi’ and to comment that they’re glad we’re back. They can tell we’re back because the yard already looks so nice. They’re thankful for that. We did some landscape planning and some cleanup. I took out the seven small junipers that C has always hated. We’re planning for something new, but we don’t yet know what.

I got the cars washed, too. M helped a little bit. Both got washed on the outside; the Jag got vacuumed out in the cabin and the trunk. Then I washed both sets of floor mats, and sprayed vinyl protectant on the rubber mats … same stuff that makes the tires look all shiny. The mats never looked better. A little protectant on the shielding under the hood, and my car looks showroom new again.

Most of the day, however, was spent on the garage.

See, the garage still is full of ‘stuff’ left over from the move: extra appliances; boxes of tax paperwork old enough to be discarded but still with us; clothes ready for donate/resale/hand-down; and the like.  We managed to get a bunch of stuff onto the shelves, and consolidated/culled a bunch more. We have three loads of stuff to go to donation, and will post the appliances to craigslist this week. Once the donations are gone, and the appliances are sold, we should be able to get one car into the garage. Both cars? Well, that’s a different story. That’ll require phase two of the culling of the contents of the garage.

While we worked on the garage, M shared that she’d like to become a vegetarian. She doesn’t want to eat meat that had to die to make the food. She’s okay with vegetables, fruit and beans. She’s okay with eating eggs and milk because no animal ‘died’. She wants to include bacon and sausage and fish. In other words, she wants to avoid most pork, most poultry and all beef. That’s her idea of vegetarianism. She’s a lacto-ouvo-baco-sauso-pesca-vegetarian. Uh huh…

Well, far be it for us to put that down in any way. While R (the vegephobe) is at Outdoor School, we’ll use this as a family project to explore lacto-ouvo-vegetarian eating habits. M can see for herself how a vegetarian puts together the right foods to make for a balanced diet. This’ll be fun. And it’ll be informative for M. Then, she can decide what she really wants to do, and feel peaceful about her decisions.

So, we feel pretty good about where we are. It was great to be of service to someone else at a valuable and critical time. We spread lots of peace-of-mind this weekend. And for that, we were blessed with peace-of-mind in return.

The Med-volution

R is in transition again. His meds are like that. This time, though, we also have a new doctor. The new doc is reviewing R’s charts and has made the following changes:

• The Risperdal is done. We’ve been using this one since 2004,
• The clonidine sleep aid, in use since 2004 also, is being replaced with something similar but safer.

The impact over the last two weeks? Good. R is so present, so in the moment. He’s helpful, courteous, he’s sensitive, he plans ahead. He seems to recognize the tension in someone else’s voice and feels the tension himself. He hates the ‘drill sergeant’ tone of voice that, before,  was required  just to get through to him. Now? Not so much.

A year ago, we switched his ADD med, and our kid came back from the brink. It was an improvement, but there were still some issues. Now, though, as the Risperdal slowly flushes from his system, we’re getting a kid who…. acts like a kid.

Even as recently as a month or so, I would regularly find myself telling him that he needed to start acting his age, and to stop acting seven. Hmmm… only now do I realize that he was seven when he started using the Risperdal? And that as soon as the Risperdal is gone, he starts acting more like his age? I should have known. It’s my fault for not seeing that connection for myself already.

R’s people skills are much, much better. R’s fencing is now rather passionate and interested. R is diving in to his boy scout activities, and he’s already reading next years’ math texts in his spare time. He’s behaving more like a kid with a 150 IQ would be expected to behave. And that’s a good thing. He’s getting lots of positive reinforcement. He’s being taken seriously and treated with great credibility. And he should, because when he is able to express himself, he usually has a LOT to share, at a very high caliber.

And, today was the school Design Competition day. R and I built a small trebuchet for the trebuchet competition. It’s his first go-round on the trebuchet competition. We’re prepared to participate but not place very high, then learn from the experience for next year. R can wrap his emotions around such a strategy now…before? No way.

I’m proud of him. I like having a twelve year old boy in my life.

C updated

At the five day mark since C came home from her surgery. How's she doing? Pretty darned well, all things considered. She's getting around pretty well. The pain meds work well enough that she starts to think that she doesn't need them any more, so she stops taking them. Which means that suddenly she REALLY needs them and gets VERY grumpy until they catch up with her again....at which point the cycle begins again <GRIN!>

Sam the cat has quietly and expertly inserted himself into our lives. Sam has selected C as his preferred person, followed next by M. In other words, he definitely likes the girls. Which is just fine with Shadow, because she has always preferred the boys. Both cats get along with the other just fine so far. Sam hangs out on C's side of the bed. When C gets up, Sam follows her to her new location, then hangs out with her there. He's quiet, has yet to misbehave, uses his litter box inviolably, and hunts spiders. What is there NOT to like so far?

C has also shared that she's starting to notice a reduction in her joint pain, and other chronic issues that were side-effects of the Tamoxifen drug. As she migrates away from Tamoxifen, she should see a general loss of weight, and better joint health overall.

C does seem to run out of gas by about dinner time, though. It's a little bit like 'back in the day' when chemo would cause her to literally shut off without warning. She does that now, too.

We're making some progress each day on settling the house in. It dawned on me that the last time we lived here, we slowly evolved the house into a fully functional space over the span of about four years. This time? We're doing everything we did then, plus a bunch of setup stuff that we never got around to before - like cupboard pullouts to make it easier for C to reach things on the very bottom shelf. The result? I'm doing in one day now the equivalent of about six months slow evolution the first time.

Curtains have been going up in the bedrooms. M's room is really cool now that it's finished. R's room is developing a great sense of personal character as well. There are still a few scattered boxes on the landing and in the master bedroom, but they're steadily disappearing.

We planned out the curtains for the main level today. Tomorrow, the rods and drapes will go up. C is apparently planning to prepare pictures/paintings for hanging on the wall tomorrow as well. Once the drapes are done, and the paintings are on the walls, the place will be nearly complete.

Of course, there's still the office and the garage to tackle. The Office has served as our staging room. It's a pile of boxes right now. We'll get to it last, but it'll be worth the wait.

C is Home

Those who see my facebook posts are more up-to-date than blog readers. Because the blog’s mission is to only share good news, I held off on posting to on C’s surgery. My caution, in hindsight, was unwarranted.

C’s surgery went amazingly well. The surgeons started early; they needed less time than planned. So she ended up in recovery a full two hours earlier than expected.

C’s time in recovery was minimal and smooth. C has had previous experiences with difficult recoveries coming out of anesthesia; all I can say at this time is that the docs have C completely dialed in. They put her under smoothly, they bring her out with comfort and grace.

The surgeon reported to me that the tissues they removed looked to be healthy and cancer-free. Now, normally you don’t want to hear that the surgeon took out healthy tissue – you want to hear that they’ve LEFT the healthy tissue and taken out obviously diseased, problematic tissue. Point taken. This is a little different.

C’s procedure about six weeks ago removed a polyp that turned out to be pre-cancerous. The doc’s recommendation was to remove the now-unnecessary organ where the polyp was located* as soon as possible, so as to 1) ensure there wasn’t more cancer in there, and 2) to generally simplify C’s post-cancer life.

Given the whole picture, the removal of generally healthy stuff is good news.

C moved from recovery to a room at about 6pm; so an overnight stay was the expectation. C stayed over, and came home about 5pm the following day – yesterday.

She’s getting around effectively, though gingerly. She’s not tackling stairs. And, if she gets a little behind on her pain meds, she definitely gets told by her body why she’s supposed to take the pain meds. She’s loopier than normal; it’s a little frustrating but also incredibly endearing…

Beyond that, everything’s fine. Like I said, she’s not taking the stairs, so she slept on the couch last night. I’m thinking she’ll be making her way upstairs by tomorrow night.

 

* see how I dance to avoid naming body parts? Astute readers can connect the dots adequately.

19 Days…

…until C’s surgery. November 1oth. The family is in-transit in a major way. It’s unabashedly chaotic and minimalist. But it has direction.

We’ve been “camping” at Dragonfly most of this week. C and I are sleeping on a queen air bed on the floor. R is sleeping on a trundle bed in the family room. M could sleep on one of the two other beds downstairs, but instead she chooses to sleep in a sleeping bag on the floor of her room so as to be surrounded by the mural she and her Mom have been painting. For furnishings, we have:

• a kitchen table,
• two living room chairs,
• a family room hide-a-bed sofa,
• a fully furnished student room, and
• an air bed in the master bedroom.

We’re eating off paper plates. We have a couple towels and soap, but no shampoo!  We have yet to ferry dishwasher detergent over from the other house. Rather than an ordeal, we’re choosing to make this into an adventure.

The furniture starts moving this weekend. The required interior wall painting has been accomplished. The POD went away this morning. Replacement appliances arrived at 9am today. We have laundry services! Replacement carpet gets installed either today or tomorrow. The stove gets delivered on Saturday, separate from the movers.

Our exchange student moves in TOMORROW. We’ll start bringing clothes-and-such over as soon as tomorrow, working ahead of the movers where ever possible.

The biggest wrinkles remaining?  Getting the DLP TV, which needs repair, in for service before Sunday; breaking down the remaining unpacked items at Stark and getting them staged for the movers to put on the truck Sunday morning.

All of this with an eye on the hard-and-fast deadline of EOD Nov 9. What isn’t done by then, will proceed much more slowly afterward. Because that’s when things forcibly slow down for C’s surgery.

I’m proud of how my family is  learning to put prioritization into practice  though this process. When something comes up – some idea or issue or “need” for improvement – my family is starting to say things like “is this a need or a want? Does this require completion before surgery, or can it wait?” If not a move related requirement, it moves down the list. Everyone is increasingly comfortable with the idea that things go on the list based ont the balance of due-by and  importance, that sometimes order of completion does not always reflect overall importance or value of the issue. The historical dynamic of the family has been to use an interrupt stack (you know what I mean here -- where the newest idea moves to the FRONT of the list, only to be pushed back by the NEXT new idea). The dynamic is  morphing into a prioritized list that identifies needs, wants, nice-to-haves, and must-be-done-by dates.

Of course, there needs to be room for some want fulfillment as well. C just informed me that she’s purchased a student-grade harp. It’s smallish, and not the highest quality, but she can use it to discover if she loves playing the harp in reality as much as she’s in love with the idea of playing the harp. If not, we can resell the harp. Simple as that.

In C’s case, if having a harp puts her more at-ease going in to the surgery, then it’s a good thing. Her mental well-being is crucial. That she bought the harp tells me that she’s got her gaze firmly fixed on the distant horizon of the far-reaching future. Even with a cancer surgery looming in 19 days. This is a good thing. Back in 2006, as she was coming out of chemo and radiation, her view into the future only spanned days. A couple years later, her view had widened to span 2-5 years at most. And now? She’s planning to learn the harp during her convalescence.

I think I like this change in attitude. She’s planning for life after. With 19 days until the surgery, her eye is fixed squarely on what comes after.

I Guess there Really Is a Sense of Violent Anger in the Spleen’s Purpose – Shakespeare Knew; We’re Just Finding Out.

 

Finally, the Spleen gets some respect, as written by Natalie Angier in the New York Times today:

Link to the article

“…the spleen is a reservoir for huge numbers of immune cells called monocytes, and that in the event of a serious trauma to the body like a heart attack, gashing wound or microbial invasion, the spleen will disgorge those monocyte multitudes into the bloodstream to tackle the crisis.

“The parallel in military terms is a standing army,” said Matthias Nahrendorf, an author of the report. “You don’t want to have to recruit an entire fighting force from the ground up every time you need it.”

He EATS! He SLEEPS! Amazing!

Those close to Typhoon Johnson know just how hard it was for R to get to sleep. Oh, he tried. He was such a good sport about it. But every other night inevitably ended with him still up past midnight, trying to sleep.

We suspected that his drug mix contributed to all this sleep issues. I think we’ve been able to confirm our concerns. I now feel confident claiming that yet another side-effect from the previous drug has dropped off the list.

In the past, getting to sleep often meant he had to sleep with us in our bed. He’s eleven. and nearly five feet tall.  I love the kid, don’t get me wrong, but this sleeping with Mom and Dad has lasted a good seven years longer than what’s considered cute. We were accommodating him by letting him sleep in our bed because it was clearly a medical need.

No, really. A medical need. Not a developmental or a maturity issue. The drug side-effects gave him no real choice.

Of course, waking him up in the morning was just as difficult as getting him to sleep in the evening. It all balanced out…and yet, I believe we’ve put the sleep issues behind us.

Here’s what went down last night and why I make such a claim:

C had a rental movie for Sunday evening viewing. R and M had their homework done, and had slept well over the weekend. So, they settled down on the bed in the master bedroom to watch the movie.

R didn’t really get INTO the movie, as it was a bit of a character study. Not his cup of tea. Rather than being disruptive, however, he politely but firmly informed his mother that he wasn’t enjoying the movie and was going to bed to read. Which he did, at about 9:30pm.

A little after 10:00pm, I went upstairs to check on him. His light was out, and he was snoring softly.

No cat-herding him to bed. No pumping him full of warm milk to calm him down. No sneaky, sleepless late night prowling.

He just put himself to bed, felt the urge to sleep, and went with it.

In the morning, he was already waking up when I checked on him. This wakefulness in the morning is also becoming his standard. In fact, I think we can try an alarm clock again. The alarm was an abysmal failure before, but I think he’ll hear it now.

I just can’t seem to wrap my head around the fact that my son now both EATS and SLEEPS.  We weren’t sure we’d ever see this day arrive.

Wait…What?

As of last week, R is on new meds for his ADD. The Patch, which served us so well for about three years, just wasn’t getting the job done any longer. Why, we just don’t know. We may never know.

What we DO know, is that R was sleepwalking through his life. He just couldn’t engage with people to any real degree. The best he could manage was a tangential interaction. Either the conversation would be full of non sequiturs,  or R would talk on topic  but with his back to the conversation. On topic and face-to-face was just too much, it seemed. We tried a couple months with a higher dose of patch, to see if that helped. It really didn’t. In hindsight, R just became more of a zombie. In recent weeks, R spent most mornings not in class but in the principal’s office, in time-out. Classroom situations just were not working for him. The school was suggesting that we send him back to neighborhood school. We were starting to consider home-schooling.

It was really pretty bad, all-in-all. R was just plain non-functional on any social level. It was like he saw the world just as the third Stooge, Curly did. You know, Curly: “I’m trying to think, but nuthin’ happens!”

So back to the child psychologist we went. Based on the results we saw (or lack thereof) from the higher patch dosage, he suggested we change R’s meds. So last week we started the new protocol. It’s a pill. It’s not as time-released, which means that R’s meds stop having an effect about dinner time; then we coast down the drug slope until bed time. The Doc assured us that we’d have fewer side effects from this med. He assured us that R would eat; that he’d sleep better; that he’d be more engaged.

He was right.

My son has an appetite again. He eats his meals in minutes, not an hour. He gets things done on his own initiative. He starts his homework by himself, and finishes it promptly. He takes a bath and remembers to wash his hair without being reminded. He can hold multiple instructions in his head at the same time.

It showed in his gymnastics performance over the weekend. I’d mentioned that he seemed to be ‘present’ in his routines. He’s been absolutely ‘present’ ever since. He’s much more kinesthetic – more active – on the new meds, but his head is in the game. I’ll make that tradeoff. The increased activity is within the window of normal; on the patch, R’s thinking and behavior was NOT normal.

It’ll take a couple weeks to establish the new normal in the classroom. I’m encouraged that behavior will change in class as it has at home. All around R, people are responding with “wait…what? Oh, sure!” First they’re caught off-guard by his different level of interaction. Then they’re approving, accepting and encouraging of him. It’s a good dynamic. R is in a better mental place.

Health and Welfare Update

So today is 22 days of recovery (I counted back on the calendar) since my surgery. How am I doing?

Well.

In the last couple days, I’ve really stopped favoring my left side. I’m pushing off with my left leg as would other wise be normal for me. I’m actively shifting my weight to the left side with confidence.  I’m bending my leg without bracing for the ‘wince’ of tenderness/pain from the suture area.

It’s still tender, but better every day.

I feel like running. I haven’t felt comfortable with running for a number of years (probably corresponding to the time I was protecting this injury).

The Cause for Gray Hair Identified!

This posted today from Discovery News:

Attention parents: It's not your kids that are making you go gray. Your hair is simply building up too much hydrogen peroxide.

Bottle-blondes may be a fan, but hydrogen peroxide, which is produced naturally in the human body, interferes with melanin, the pigment that colors our hair and skin.

The body also produces the enzyme catalase, which breaks down hydrogen peroxide into water and oxygen. Or at least it does for a while. As we age, catalase production tails off, leaving nothing to transform the hydrogen peroxide into chemicals the body can release.

So, as hydrogen peroxide builds up, we go gray, concluded researchers at the University of Bradford in the United Kingdom, who last week published the results of a study in the Federation of American Societies for Experimental Biology'sonline journal.

[link] to the entire posting