Another Clean Scan

Last week I had my quarterly PET scan and it came back clean.  Funnily enough, I wasn’t even the least apprehensive this time – I’ve been busy with other things and the scan was just something to get through.  My oncologist was pleased but reminded me that we’d agreed to do brain scans every six months as well, so I am scheduled for that next week.

Other than that, I am just chugging along, still slowly learning to live with the new knee.  My leg is refusing to straighten out completely, so that’s the focus of my physical therapy right now.  Kind of painful.

But spring has arrived and the fruit trees and flowers are in bloom, so a clean scan is still  very welcome news.

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What Was I Thinking?

What on earth was I thinking when I decided to have the knee replacement?  Why didn’t anyone question me???

OK, that’s a little extreme, but during those first, very painful days, I really spent a lot of time thinking about why I’d put myself through it.  In my pain-killer induced haze, I thought about things like amortizing the pain over time.  If I’m good to go for another 30 years, then I suppose the benefit was worth it.  On the other hand …

A knee replacement is pretty painful. There is a lot of swelling, and your natural inclination is to keep the joint from moving to keep it from hurting, but you have to push through the pain and keep scar tissue from forming and the muscles from tightening up. I have had a great physical therapist who’s been working with me, and my kids have been helping me do my exercises twice a day.  I have graduated from the walker to a cane, and am finally able to take mini-showers.  I was quite motivated to work hard, since I knew from my first replacement that the harder I worked initially, the better the result would be.  So sure, I’m griping about it, but overall I can already feel the improvement in my posture and my walking, so here’s hoping that it will be a roaring success!

Next up will be my quarterly PET scan in a few weeks.  I’m expecting it to be just fine.

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Breaking the 3 Month Threshold

calendarFor most of my time with cancer, I lived my life in short increments.  There was the chemo block of time, then the mastectomy surgery block of time, the short and sweet month of remission, and then the whole second bout.  When I finished that round of treatment, it was on to the quarterly PET scans, and given my history, I am always prepared for bad news at each three month interval.  I scheduled my knee surgery at the midpoint between scans so that if my March scan isn’t good, then I would be healed up enough to go back into treatment.

And in life, breaking out of living life in three month increments has been hard.  Quite honestly, I do think about long term things like school being out in June or about next Christmas or about going to next January’s knitting retreat, but the reality is that I have made no concrete plans that commit me to anything beyond my next scan.

It’s time to break out of this.  A few weeks ago, I was one of several applicants for a volunteer job that would involve a 4 year term.  When I wasn’t selected, my sadness shocked me.  I finally realized that a lot of the feeling was less to do with not being chosen and a lot to do with failing to have something that reaffirmed my commitment to being here long term.  I’ve bounced back and folks have suggested some more opportunities for me that I will pursue, but it’s raised my old morbid fascination with data and statistics and life expectancy and prognosis.  Cancer may be out of my body but it’s not out of my head.

But I am determined to push through this, and I will find something that breaks me out of the cycle and fills my calendar.  Because I do plan on being here forever!

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A New Knee

I won’t be updating this for a little while.  With the blessing of my oncologist, I am going ahead and having a knee replacement tomorrow.  Chemo aggravated the joint and introduced a lot of pain, and no amount of working out is helping very much.  In fact, despite working quite hard on stretching and toning the muscles, I can’t straighten that leg by a significant amount.  It has introduced a limp and a lopsided walk which is throwing all sorts of things out of whack.

My oncologist encouraged me to do it as a quality of life issue.  For me, it means that there is a life ahead that is worth improving the quality of. And that’s a very good thing.

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To Boob or Not To Boob

In the US, healthcare law requires insurers to cover reconstructive surgery after breast cancer, basically to make things look like they did before.  There are a variety of options, including using fat and muscle and skin from other parts of your body, fillers, and implants.  They are usually topped off with an artificially constructed nipple that consists of the creation of a puckered area and a tattoo, unless you have been able to arrange nipple-sparing surgery during the initial surgery.

I’ve seen a lot of differing feelings on the subject.  For some women, it is an absolute necessity, even amongst those who have encountered difficulties with the process.  My friend Dorothy decided to have an implant 3 years after her mastectomy, saying that “it put me back the way I was and allowed me to leave cancer behind me.” Others don’t give a damn and just go with the simple solution – being lopsided or having one or both sides of their chest completely flat.  Or, as we’ve been known to joke about in my house, the man-boob side.

Because I have pretty much come to the realization that it absolutely doesn’t matter to me.  I don’t feel less of a woman and I don’t care how I look, nor do those around me.  And I would say screw that to anyone who thinks that I should feel differently.

foobThen there’s the whole issue of prostheses.  I do have one, along with several mastectomy bras with built in pockets that keep things nicely in place.  It looks a lot like this one.  It is surprisingly heavy and under clothes, you would never know the difference.  But as with the wigs and scarves during my bald chemo period, I don’t much care.  There are a few places that I deem boob-worthy – a  nice evening out or a business meeting –  but most days when life consists of going to the gym or the library or the grocery store, I just can’t be bothered. It’s not as comfortable as going au naturel, I’ve gotten used to having nothing there, and quite frankly, who am I doing this for?  Yes, there are times where I want the anonymity, where I don’t care to share with strangers the fact that I had breast cancer, but for the most part it’s simply not important to me.

Women have to make their own decisions about this and it’s an intensely personal choice.  I seem to have made mine, and that’s to forego reconstruction and just take the easy route, which means that most days I’m going around with one woman boob and one man boob.  If you see me and notice that I didn’t find our encounter to be boob-worthy, don’t feel like I didn’t care enough to put my foob on for you, it means that I know that you care enough for it not to matter.

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Terrible and Wonderful People

On the day last February that I started my second round of chemo, I had a bizarre encounter with the woman in the next room.  I shared it with my online support group in the form of a hypothetical letter, and have decided to share it with you.

Dear lady in the next chemo room,

Do not ever, ever come up to another patient and play the poor-pitiful-me-I’ve-got-cancer card. It’s too bad that you have stage 3 cancer and that you have to have chemo, but you really need to unlock the shared bathroom door, and I do not think that it’s out of line to point out to you that I’ve been locked out of the bathroom twice already today. And I really had to go!

I wanted to say fuck you, my cancer is worse than yours, but that was not somewhere I wanted to go. I said something about this being hard on everyone. We all react differently to the stress and she is entitled to hers, but I was surprised at how angry I was when she said her little piece and left in tears.

My online support group rallied around me and soothed my ruffled feathers, but very quickly I somehow ended up defending her.  It sounds strange, but I had soon realized that despite me being angry about her outburst and unwarranted invitation to a cancer-off, I had something that she didn’t have.  I had support.

Throughout my treatment, my husband was by my side every step of the way.  There aren’t words enough to express what he gave me.  I hope that he knows the depths of my appreciation.  And this anonymous woman in the next room was there by herself.  Through hours of chemo she lay on a bed with no companionship, only the busy nurses coming in and out of the room to change her medications.  I had someone to go into her room to ask to unlock the door, to bring me drinks, to hold my hand, and to watch over me as I dozed.  Despite my more aggressive cancer, I was the lucky one.

The unit social worker at the chemo center stopped by the following week during my next treatment to discuss some paperwork issues. I talked with her about what had happened and suggested that she look up who the woman had been and to see if she needed additional support.  My online group was kind of amazed at this and gave me some undeserved kudos for my actions.  To me it was a no brainer – having to go through this alone is almost inconceivable.

And the point of today’s rambling is to talk about a family who have taken this attitude above and beyond anything I’ve ever encountered.  When my cousin recently developed metastases 8 years after her initial breast cancer fight, her sisters sprang into action.  They have been what seems to be a marvelous support to her, but no one more so than her sister Fiona, who has moved from another province to be with her sister and to help her with her treatment, diet, exercise, and life in general. Way to go, Dixon ladies!  And to those of you reading, please add my cousin in Victoria to your prayers in support of her fight.

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The C Word

I recently had someone close to me email me to say that she was going through a cancer scare. It was before Christmas and she didn’t want to tell her family until after the holidays.   I immediately got on the phone to her to give her someone to talk to, to share all of the details of what was going on, to find out what was known and what was still unknown, and to just let her know that we cared.

Hearing the C word for the first time is terrifying.  For me, it was when I was 32 and had my first basal cell skin cancer .  I now find that incident insignificant, but at the time, the word cancer consumed me.  It really made me aware of my own mortality.  It wasn’t going to kill me, but IT WAS CANCER AND PEOPLE DIE OF CANCER.  By the time I hit the melanoma stage, it wasn’t that scary, just another damn thing to get through (even though melanoma can kill you), and quite honestly by the time I heard that I had breast cancer, the word had lost its power over me and I just wanted to get my plan together and to get on with treating it.

There has been some discussion in my support group about whether Stage 4 cancer is worse than Stage 1.  Of course it is, on one level, because it puts you that much closer to it being terminal.  But it’s not worse, on another level, because of that pesky C word.  If it’s the first time you’re hearing it, it has the potential to overwhelm you, whether you have Stage 1 or Stage 4.  I view it as being like a balloon.  The very first time you blow it up, it goes from something very small to something very large that displaces a lot of area.  Each subsequent time the balloon is blown up, it may be bigger or smaller, but you’re mostly over that initial OMG feeling.

So if you know someone who’s going through any type of cancer, have some understanding of how much of their life can be displaced by this enormous balloon full of reaction.  They aren’t “dwelling on it” or looking for sympathy – they are are struggling with issues of mortality and fear and uncertainty.  Sometimes the best thing that you can do is to just be a sympathetic listener and let them know how very much you care.

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