Monthly Archives: November 2009

Wild Hunt Winter Pledge Drive

Most of you already know this, but just in case . . . .  The Wild Hunt, a daily collection of news of interest to the Pagan community is holding a pledge drive through November 22.

Jason Pitzl-Waters is honest and makes every effort to be objective while retaining a uniquely Pagan perspective. The Wild Hunt is one of the few community resources that remains fresh and ever-vibrant. Even a small donation is a show of support, and I urge everyone I know to donate something. I am, and I have major medical bills. That is how important I believe The Wild Hunt is.

On a more personal note, The Wild Hunt is one of the motivating influences for my creation of Facing North.

Improving by leaps and bounds

Yesterday was a banner day in two ways:

1. I was able to increase the time between meds from 2 hrs to 2.5 hrs. Without pain or discomfort.

2. I was able to go for a walk TWICE. The evening walk was especially beautiful. No rain, just very windy and it had warmed up quite a bit. The air smelled so good and fresh, it was intoxicating. The second walk left me tired, but invigorated.

I have begun dreaming again. I’ve been having ‘dreams’ almost every night, but last night was the first time my dreams were . . . shall we say? relevant? . . . When I begin to dream of myself as missing a breast I will know I have assimilated a new self-image. In the meantime, I’m talking to beings again and having colorful adventures. (I dream in color, generally.)

Today . . . today has been a joy, and it’s barely begun. I had a shower, and J. washed my hair. It was awkward and a bit messy, but I feel truly clean for the first time in a week. (I smell better, too.)

Sitting at a computer is still a bit of an effort. My mental acuity is fairly low, and my motor skills are also slower than usual. Not being able to move my left arm is more debilitating than I expected. Working around it often produces a cramp in the left shoulder, about mid-blade. One of my tasks today is to look into gentle stretching exercises I can do to restore full movement in the left arm.

I’m going to go for a walk while it’s not raining.

Waves Gently

Hi everyone, Lisa here. *waves gently*

I’m briefly online, checking in on a few things (gosh golly, I made it until TUESDAY!), downloading email, and then I’ll take some time to read and respond.

Y’all have been wonderful and I am doing VERY well. Still can’t raise my arms above my head, and I’m keeping my left arm tucked tight most of the time. But pain meds (dilaudinum?) are working well, I’m eating gorgeous food (broiled salmon and broccoli last night, shrimp scampi tonight), getting lots of sleep, and watching lots of movies. (yay Netflix.)

More news coming as my coherency rate increases. Keep the energy flowing — it is WORKING.

More Lisa Updates

Heigh ho, J here,

First of all, my apologies for a slow update. I actually thought that I had pointed out my twitter feed, where I have been updating regularly, but as you can see I actually didn’t (until now). Sorry about that.

Fortunately, no news has indeed been good news. Lisa came through her surgery with flying colors. Both surgeons (the one who performed the mastectomy and the reconstructive surgeon) gave excellent reports right after their respective portions. Lisa was into her visitor-accessible room just after 8PM on Thursday. She spent all day Friday at the hospital, making good progress mentally coming around but not feeling up to walking yet. Saturday morning, her mother and I arrived in the AM to find her sitting up with her feet on the floor, pants on, reading catalogs, having finished her bacon & egg sandwich (!). She was done with being in the hospital, and those of you who know Lisa know the look that was on her face. 😀

So she’s been home since Saturday ~11AM and doing just fine, all things considered. The meds keep her mellow, but we’ve tweaked the dosages just a bit (less of the narcotic pain-killer, but more frequent) and she doesn’t get truly woozy. We’ve also added Tylenol to the mix with the surgeon’s blessing, and that seems to be filling in the little “gaps” in the pain management. She gets up and moves around on her own, although she still mostly stays in bed.

The extra bit of good news that we’re trying not to be tooooo excited about just yet is that the biopsy of her lymph node that occurred during surgery was negative, which indicates that there is no further cancer to be concerned with. The reason we’re not hopping up and down yet is that that was a “rough” test that has 85% accuracy; they then send to a lab for the more thorough test, which comes back in 7-10 days. The rough test is still pretty accurate, but since the chance is still out there we’re trying not to get ahead of ourselves.

Thanks to everyone for their thoughts, prayers, energy, and positive messages. It was amazing, actually, how my new smartphone (I’ve been completely phone-less in the cell phone era until ~a month ago) let me update people and share their sentiments with Lisa while we were in the hospital. Anyway, I’ll post again in a day or so as things develop, and don’t be surprised if you hear from Lisa before too long; she already couldn’t help herself from sitting briefly at her desk and checking mail. 🙂

How Lisa is Doing So Far

Hi, Lisa’s “J” here. She’s been a champ so far. She’s been admitted, and had one serious treatment so far – a radioactive dye was injected so that pictures of her lymph nodes could be taken. “Amusingly” she had differing reports on the procedure. One nurse said “this will be the most painful thing you go through today” and another said “it won’t hurt a bit.” Fortunately, the latter turned out mostly to be the case; save for a little pain, all was well.

Now she’s back in a pre/post-OP holding room. She has a visit from the anesthesiologist coming up, and assuming no delays (not that safe a bet, really) she’ll be in the surgery process in an hour. I’ll tell you more when I know it. In any case, if you’re disposed towards sending positive energy her way, an hour from now would be a good time to start. She’ll appreciate it, and heaven knows I will.

Cheers,

J

EDIT TO ADD: she’s on surgery now and will be for another couple hours. All quiet on the western front.

last thoughts

As I ready myself for sleep, I find myself calmer, but still uncertain.

I’ll write more on this later, but I have been ‘sitting with’ the idea that this process is very much like that of being pregnant, and giving birth.(Which is why the ‘abandoned but still having the child imagery from J. yesterday was so particularly apt in the moment.) Like any soon to be mother, I have fears that can not be allayed.

Laffingkat said it well in her comment to me yesterday: I may never be sure, but waiting won’t help. Labor will be induced tomorrow, the only way out is through.

I feel strong, and supported. So many of you have stepped forward, old friends and comrades have written to say they will be thinking of me. Magic is being worked, prayers sent, and positive vibes sent. I am in as good a place as possible, and I feel it.

The next post should be from J. to let y’all know what he knows, tomorrow night or Friday morning. I don’t know when I’ll be online again (certainly not until I’m no longer on serious pain meds — although y’all might be heartily amused by my ramblings. 🙂

Until then — thank you. Thank you for your generosity, your care, and your compassion. My friends and loved ones have proven their worth and I am humbled and ennobled all at once.

I feel blessed, and that is a very good way to be in this moment, in this time.

I finally lost my cool

Yesterday was a kind of a breakthrough day. Without going into *all* of the details, suffice it to say that the ‘pre-op’ meeting I had scheduled with my plastic surgeon wasn’t what I thought it would be, and I still had to go to the hospital for my bloodwork. Moreover, even though I had a 2pm appt., we didn’t get brought back until 2:45, and then we waited for another 15+ minutes — in an EXAM room. One chair, a padded table, and a sink in a cabinet. J. was forced to lean up against a wall.

I was irritated. It’s the first time I felt like a 2nd class citizen, like my wallet meant more to me than my self. I was surrounded by wealth earned from (basically) elective surgery — the diamonds on the scheduling lady were worth more than my home. No one was courteous enough to say anything about Dr. B running late, or even to apologize for wasting my time.  In getting irritated, I realized that I was also afraid. The fear was feeding the irritation, and what I really wanted to do was throw a massive hissy fit, get all emotional, and refuse surgery. J. was worried that I might (he knows I can get fairly irrational when emotional), and we talked as best we could about me making decisions that were like the old tale of cutting off the nose to spite the face. I felt angrier and angrier.

I finally left. Just walked out. I stopped by the reception desk to sign the consent forms and one of the (many) staff asked if Dr. B. answered all of my questions. I replied that I hadn’t seen him yet, but I wasn’t going to keep waiting. While they were getting the forms together, said staff member came back and said “Dr. Barker needs to see you.” I said, am I going to have to wait? She said, oh no. As we went back into the exam room, she says to me, “put on this gown, so he can do an exam.” Exam? now? WTF?

I like Dr. B. and seriously, when he came into the room I started to calm way down. He immediately apologized — his staff had sent him into the wrong room and he ended up seeing someone else first. (Finally! an apology!) Then we talked. 15 minutes that were, in the end, worth it.

We then went over to the hospital, it’d been 2+ hours by then and I was hungry, tired, and still emotionally-wrought. Again, emotions flooded over me, all of them negative. I realized that this was real (yeah, duh) and I didn’t have many options and I STILL wasn’t sure reconstruction was a good idea. Oh, everyone assumes it will be done, its only a matter of time. but I loathe assumptions, and have a real thing about fulfilling them. Dr. B. put it very well: “What it comes down to is whether you want an internal implant or an external one.”

I felt/feel manipulated by assumptions. As we drove home, I said to J that I resent the assumptions and it was really a problem because it is getting in the way of me being able to find positive associations to the idea of having an artificial breast. I said “I guess my birth metaphor doesn’t really work” he told me it does, but this was a scenario where I’m pregnant by a guy who has disappeared and I don’t believe in abortion so I have to have the baby — but there ain’t no joy of life going on here. I laughed.

I know I will know more post surgery. All of my visualization and guided imagery and suchlike have been helpful — but I continue to not be sure the implant will be worth it.  I’m playing the odds, but am not sure.

Mr. Toad’s Wild Ride is Slowing Down

It’s been a tumultuous week, so much so that I haven’t felt like writing about it. I’ve been doing quite a bit of talking, however, as well as visualization and imagery manifestation . . . but let me tell this story in it’s proper order.

In my last update I talked about going into therapy and a bit about my struggle with deciding whether to have a reconstruction if I have a mastectomy. I asked for help finding images of one-breasted women — in art, literature, etc. to help me visualize the choice I am making. A few of you were very helpful, M. in particular, sent me a link to this incredible site (NSFW) which tells the story in words and photos of a young woman with a bilateral (double) mastectomy who underwent reconstructive surgery. On my own I found this inspiring picture (click on ‘tree poster’). This is, frankly, the external image I most strongly resonate with. A courageous woman posted her vacation photos ‘double mastectomy, 4 years after‘ on Flickr and I found them pleasing as well.

Lupa wrote to me and suggested I do some work with guided imagery/ visualization and I tucked that away to contemplate and see what I can do to manifest. Diana called me to talk about it. We laughed, delved, discussed and she suggested I get some clay or scuply and make body figures of myself. With breast(s), missing one, with different sized breasts, etc. Once I make them, crawl inside them and see how they feel, and how I feel. I bought clay the next day.

Two people I trust said nearly the same thing at different times: there is a value in being ‘normal’, or at least appearing normal. What you carry in your heard can be extremely nonconformist, but it is easier to move through the world if you don’t stand out much.

I met with the plastic surgeon and we talked options. Mostly, I can have almost anything I want except no surgery. He agreed that a full mastectomy will be safer than a partial, and he strongly spoke out against radiation. “If I had to choose between chemo and radiation, I would choose chemo. Chemo makes you sick and your hair fails out. But your hair grows back and when the chemo is over all of the drugs are out of your body. Radiation is permanent damage to your cells. It’s forever.”

I thought that was very interesting.

In the end, it turns out that my best option — the one that keeps the most doors open to me — is to have a ‘skin conserving mastectomy’ with an immediate reconstruction.  What this means is that although much of my breast will be removed, enough will be left to cover an implant so I don’t have to remove skin and fat from another part of my body to create a new breast.

They will place an extender in, just under the muscles of the chest wall. This device will gradually be inflated with saline over several months until it’s the size I want my new breast to be. At that point the extender will be removed and a permanent implant will be placed inside. Let’s be clear: my breast will look normal, but it will not feel like, nor be shaped like, my original breast. I will also lose 90% of sensation in that breast. These facts just aren’t discussed much outside of the doctor’s office.

We will not be doing any surgery on the right breast — mostly because I want to lose a fairly significant amount of weight and my breast will change shape as a result. So, it would likely require more surgery in the future to re-shape it. No thanks. That means I will have surgery on that breast in the future, however.

I am content with me, myself, and I. I am not above changing (goodbye 30 pounds!), but generally speaking I live in my body and we get along well. It is no longer a vehicle which moves me through the world, and nothing more. So, there is a value in being returned to ‘how I was before’ cancer. But I remain uncertain if that will be the case.

At this point, I’m still working with my imagery and seeing what, if anything, my decision is altered by. (Last night, for example, is the first time my dreams had anything remotely ‘hospital’ or medical in them. And it wasn’t particularly relevant or dramatic.) I figure I have until the day before to change my mind. After all, I’ll essentially be telling one surgeon to go away and keeping the other surgeon. It’s not like I’ll be trying to find a second surgeon at the last minute.

So, a bit of a timeline:
Tues: pre-op meeting with plastic surgeon, bloodwork done to ascertain I’m healthy enough for surgery

Wed: I am spending much of the day getting pampered. I have a body wrap (rosemary-mint), mani/pedi, haircut, and body massage all scheduled for the afternoon. My mother arrives.

Thurs: check-in at 7:45, receiving pre-op care by 8am; radioactive infusion injected into several points in my breast at 10am; noon: make sure that dye reached the nodes; surgery begins at 1:30pm ~ there is a possibility my surgery will be moved up to earlier ~ end time: unknown

I will spend the night at the hospital.

I may or may not be discharged on Friday, it depends on my comfort level and whether there are any complications. Saturday is a definite discharge date f I’m not home already.

Basically, the following week will have me as non compis mentis. I’ll be taking it easy, bound up, sleeping, on meds, watching TV, and trying to do light exercise to keep the blood flowing. Day one light exercise will be getting to the bathroom and back, but I am to gradually increase my range and ability.

The week following includes Turkey Day, and I’ll still be home, but back to being compis mentis. That seems to be a Tylenol week, rather than narcotics. I will be going slowly mad, however, from confinement.

The weeks after that I hope to return to work, at least part time, and then going forward will remain part time until I am fully recovered. I will not overdo it and end up in the hospital again.

* ) O ( *    * ) O ( *    * ) O ( *

I have a task for all of you who choose to accept it: My surgery is scheduled to start at midday, with a major procedure beginning at 10am. The message to focus on is threefold:
* The procedures are going smoothly.
* There is no pain and healing is swift. (Note: blood flow seems to be critical as the primary complication is skin dying due to a lack of blood supply reaching it.)
* This will never happen again.

I will have J. post a message here post-surgery to let y’all know how its going.