Breast Cancer Awareness Month: Working During Treatment

It's a couple of days away, but I received a transcript from breastcancer.org this morning and I wanted to share the link before I forget. I worked as much as I could during my breast cancer treatment (and, of course, I'm working during reconstruction), but it wasn't easy.

On September 19, guest speakers Barbara Hoffman, J.D. and Irene Card and moderator Ruth Oratz, M.D., F.A.C.P. answered questions about the legal, financial, physical and emotional aspects of working during breast cancer treatment. You can find the transcript here:

http://www.breastcancer.org/community/ask_expert/index.jsp

All's Right With The World, My Soul-Specific Absurdity

"The leaves fall early this autumn, in wind. The paired butterflies are already yellow with August Over the grass in the West garden; They hurt me. I grow older." ~ Ezra Pound

It's shaping up to be a fabulous day. I saw my new medical oncologist yesterday and I'm not sure I like him. He spent a lot of time talking about the history of breast cancer treatment, dictated notes to be sent to my g.p., and made a book recommendation to my mom. He noted that I'm hypertensive, even though the exact opposite is true. My blood pressure usually hovers somewhere around 106/70. I'm almost certain he used that word. I managed to catch little snippets of information while he was doing the dictation, but he was talking so fast I couldn't understand much.

Here's a thought: Ask me. I think virtually everyone's blood pressure gets a little elevated when they visit a doctor. Maybe the doctor doesn't have time to ask me (although he could have worked it in if he hadn't been giving that long book report to my mom), but his nurse should have. I actually did tell the nurse, but I guess she didn't feel it worthy of writing down. I was also running a temperature. If my temperature is 98.6, I'm really sick. I constantly try to point this out to my phalanx of medical professionals and, across the board, they all ignore me.

On the osteoporosis front, I'm 1/2 inch shorter than I used to be. The rapid diminishment in height is a direct result of chemotherapy. Prior to breast cancer, I already had osteopenia (the early and less serious form of osteoporesis), but I had no idea how much my bone density had fallen victim to breast cancer treatment. Great. Now I only have one real breast, tissue necrosis, scars everywhere and I'm now bitty. Things are definitely looking up.

Dr. Sandbach (new M.O.) ordered a chest x-ray, which I'll have to pay for. Hubby has sucked virtually all of the money out of the Breast Cancer Slush Fund, so that won't be as easy as it has been in the past. This puts me in a simply marvelous mood. I have to admit that it's been a bad day right from the get-go (as we like to say here in Texas) and it's only 9:25 a.m.

Autumn is here. I got a few glimpses this morning of my steadfast squirrel friend; the leaves are already thinning enough to make it easier to find him. Autumn is never good. I've just passed the 3 year anniversary of my best friend's death and, in October, the ten year anniversary of my dad's suicide is coming up. Two years ago, right around this time, I was trying to prepare myself psychologically to get through my mastectomy.

Then there are all those awful memories from childhood that carpet the season. Flashbacks happen any time of year, but fall invokes a pall that is too rich, too complex in pain to be able to tease out the specific memories. It's always been this way and maybe the lack of distinct recall is a good thing, anyway.

I'm physiologically highly attuned to changes of season. The advent of autumn is the beginning of dying for so many things. My little squirrel soon will come to be very visible; all of the leaves on his playground of trees will have died.

The skies are overcast today. I've gotten to work on my seasonal affective disorder right away. Why waste time when you can get started now?

It's all pretty amusing, if I look at it in the correct context. I'm sitting here in Crazy Land, eating dry cereal and feeling like hell, contemplating the cycle of life. I'm stressed out over the continuing medical events and still in pain (especially my colon). For a little over 3 weeks, I've worn a girdle 24 hours a day, 7 days a week (because of the liposuction in the donor site), which is extremely uncomfortable, though significantly less so than how it feels without the girdle. Of course this is how I'm spending my morning. Otherwise, it wouldn't fit into the overall paradigm of my life. My entire life would lack consistency. As it is, in all of its soul-specific absurdity, this morning is further proof that God's in His heaven and all is right with the world.

The Solitudes of Childhood

"How is it possible not to feel that there is communication between our solitude as a dreamer and the solitudes of childhood? And it is no accident that, in a tranquil reverie, we often follow the slope which returns us to our childhood solitudes." ~ Gaston Bachelard

I have a dear friend (Hello, C!) who recently suggested to me that two years of breast cancer treatment and reconstruction surgery triggered a recurrence of many Post Traumatic Disorder symptoms. She's a very wise person.

I saw my psychiatrist yesterday, armed with a list of my issues: crying (and crying and crying), nightmares so horrifying that I'm afraid to go to sleep, nearly invisible self esteem, a staggering inability to concentrate, colon pain (the return of IBS). I'm just hitting the high points here; there's no need to enumerate them all. I'm certain you get my point.

Having returned on Friday from a seminar about Post Traumatic Stress Disorder, my psychiatrist understood immediately that all of the new breast cancer related physical and emotional trauma reawakened the areas of my brain that store all of my childhood trauma. The brain recognizes the similarity. My friend, C., was right. My PTSD was relatively well-managed for almost ten years (things got out of hand when my dad killed himself), but the symptoms are back with a vengeance.

My ongoing brain fog is at least partly due to that area of my brain that controls cognitive functioning, logical thinking, etc. going on strike, so to speak. I've been attributing it to chemo brain (which I've read can last for up to ten years), but it may have nothing whatsoever to do with chemotherapy.

The nightmares were certainly no mystery. I dream of people chasing me so they can conduct medical experiments on me. I dream of being physically assaulted. (A humorous aside: my most recent assault dream featured some people beating me up with a large wooden penis. I'm guessing that's because my oncology doctors are all men. It wasn't so funny in my dream, though.) Some of the nightmares have clearly hearkened back to specific incidents of childhood abuse, a fact that hadn't occurred to me.

I have new, short-term medication to help me deal with those nightmares. I've been terrified to go to sleep, but last night there were no nightmares.

I've also started taking a very low level of a medication I just weaned myself off of with a great deal of difficulty. It addresses serotonin issues. I'd already guessed that might be part of my problems, but I've been trying hard not to add new medication to my already beleaguered body. If nothing, else, this will address the colon pain. Eliminating any single source of pain can only be helpful at this point. I'll deal with weaning myself from it again when I can. I hope that's in the near future.

Diminished cognitive functioning explains why I've had so much trouble formulating the structure of the database I've been working on forever now. Of course, knowing why doesn't help me be more capable of working faster and thinking clearly. At least I know I haven't gone permanently stupid, though.

Today, I have an appointment with my new medical oncologist/hematologist. No trip to M.D. Anderson this time, which means I won't be quite as tired and stressed as I usually am when regularly scheduled blood tests are required. Had they not taken Dr. Crisofanilli away from me, I would have gone, anyway. The upsurge in patients means they move those of us not actively doing chemo to nurse practitioners. Doesn't it seem like the better solution would be to hire more medical oncologists? Of course, no one asked me.

The saddest part of that situation is that it must mean an upsurge in cancer diagnoses. That means more people, their friends and loved ones will come to understand a new, higher level of suffering than they may have previously known. They will learn to live with a higher level of fear.

As for me, I'm optimistic about my new doctor and about my blood tests. It would be great if I could work in a nap while I wait. I'm trying to work longer hours this week, but today doesn't bode well.

It Goes On

"In three words I can sum up everything I've learned about life: it goes on." ~ Mark Twain

It dawned on me a couple of nights ago that things may never be the same. The swelling in the new girl had finally gone down a bit and I was able to feel a ridge running underneath it. It's like having an underwire bra under the skin. That may theoretically seem like a good thing, but it's not.

Everyone I know who's had reconstruction surgery has always told me that, in the end, no one will know that the "breast" I end up with isn't a breast at all. No one, they told me, will even know I had breast cancer unless I choose to tell them. I sort of had my heart set on it. Of course, I also had my heart set on everything being finished a year ago, but this is a lot harder to accept. I've gone through so much to make that outcome possible when it may not be, after all.

The problem is definitely radiation and possibly, to some extent, my body's tendency to create massive amounts of scar tissue. I heal quickly, but thick ridges of scars form almost immediately. Radiation caused a lot of tissue necrosis. There was a lot of radiation because of the wide-spread nature of the cancer (which wasn't a tumor) and the fact that it came so close to the chest wall and my neck. Once tissue is irradiated, it gets very hard.

When I was at M.D. Anderson a couple of weeks ago, I talked with a young woman while we waited to give blood. She had exactly the same conditions as I had and the doctors weren't enthusiastic about even trying to do reconstruction surgery on her. It was the memory of my conversation with her that clarified my own dire straits.

Dr. Kronowitz did an excellent job of cutting some of that necrotic tissue and scar tissue out, but there's still some there. Maybe there always will be. I thought about calling him last week when I had this epiphany, but then I decided that I might not be able to stand the answer. Not yet.

I was devastated last week. Today, I'm emotionally numb. I can only feel that bad for a limited period of time. Plus, I'm still exhausted and in pain from the surgery a couple of weeks ago. This is no time to obsess about visual wholeness.

Next week, a new round of medical appointments begins. I have an appointment with my psychiatrist (whom I'm probably going to try to fire because she's more than I can afford) and a blood check/medical oncologist visit. The next week is my annual physical and a trip to my dentist.

I'm not a human being anymore. I'm just a series of medical events.

Could We Get Along Without It?

"I have traversed many kinds of health, and keep traversing them...And as far as sickness: are we not almost tempted to ask whether we could get along without it? Only great pain is the ultimate liberator of the spirit." ~ Nietzsche

I'm Here, But Not Exactly Here

"Our life is always deeper than we know, is always more divine than it seems, and hence we are able to survive degradations and despairs which otherwise must engulf us". ~ William James

"Strength does not come from physical capacity. It comes from an indomitable will." ~ Mahatma Gandhi

I'm not online much these days because I'm battling post-surgical pain and loss of stamina. Did I mention depression and despair? They have a choke hold on my will to sit in front of a computer and do anything, from catching up on friends to reading email and comments.

First the news. I had an MRI on my abdomen last week and all was well. The skin abnormality didn't worry Dr. Ross. The surgery (with five, count them, five incisions and liposuction) was successful. Surprise. Plastic surgery is painful. Breast lift, painful. Liposuction, painful, Correction of donor site, painful. More surgery on my relocated navel, painful. I do not recommend plastic surgery. My last, physically devastating surgery gave me unrealistic hope that this round would be relatively easy. It was, in fact, not in the same league as reconstruction. Knives cutting through flesh is nonetheless not without physical consequences. Note to self: Surgery is painful. Now commit that to memory.

Earlier today, I read a review of a book written by a Harvard professor that purports to provide something of a blueprint for increasing personal happiness. Self reflection was right up there at the top of the list. In my opinion, introspection is highly overrated, especially as a strategy to increase happiness.

Here's where introspection leads me: I give up. I don't know anymore whether I can find my inner phoenix and coax it into yet another rebirth. I give up. I don't know what to do anymore to fix anything in my life. I'm overwhelmed and, as my therapist pointed out yesterday, it's most likely related to my pain level. Nonetheless, for right now, I give up. The reason is almost irrelevant.

What if the best that will ever happen in life has already happened? It's a standard mid-life crisis question, one we all face sooner or later, I think. However, when I review the history of my life, the best of my life has been only slightly less than grim. If that was as good as it will ever be, then what?

The answer to the question is obvious: Nazi death camps, Darfur, Katrina, human tragedy on a breathtaking scale. People survive, people triumph over much worse than I've endured. I will endure, too. This month, this week, today, I find nothing particularly inspiring in that understanding. I can endure. I will endure. Endurance isn't triumph, though.

I'm not sure I have the will or the energy anymore to push myself forward into the glorious future. Glorious futures require the vision to create them. They require relentless will, boundless energy and an immeasurable amount of luck or grace. I've experienced grace and luck. I've summoned will and energy. Were those things not true, I would not be here. I'm not sure where they've gone, though.

I have more surgery coming, in approximately three months. It's classified as elective, but that's a lie. I can't stop now. It's like the lie of remission. Remission means nothing to me. I have more blood tests coming, regularly, for the next five years. The next round will be at the end of September.

People at work say to me, with a smile, "You're in remission now, right?" What they do not know is that oncologists don't really like that word. "Not medically evident" is the correct phrase. I'm angry when comfort people comfort themselves or offer it to me in the form of the magical word, "remission." The question isn't if, but when.

I don't deserve this life. I require from myself the spiritual strength to not only accept the cross, but to welcome it. In better days, I've known how well equipped I am to carry my own burdens. Others may not be so blessed and it's always incumbent upon me to be mindful of that fact. These days, though, the burden is too heavy for me, too.

My old friend, the fascist who live within taunts me: Self pity and hanging onto being a victim are unacceptable. That's where I'm living and my inability to break away from this state of mind makes me embarrassed and ashamed.

This is my self reflection for today. I can check that off my list of things to do. Next step on the road to happiness requires that I enumerate the things for which I'm grateful. There are many, but this month, this week, today, gratitude is not enough.