Last night I dreamt I could walk.

Last night I dreamt I could walk.

I used to have wonderful, fantastic dreams of flying. I would dream of soaring through the sky, swooping and gliding, powerful and strong.

Now, I dream of walking. I’m walking quickly, zipping through stores and down sidewalks with my long, graceful strides.

This has been a long, hard fight with cancer. It’s been over two years since my first surgery. I have dealt with so much; losing my hair and my energy, gaining scars and battle wounds, learning to live with constant pain. With each blow, I struggled and persevered. But losing the ability to walk has been devastating. Now even a trip to the bathroom has to be planned in advance. Stairs have become impossible mountains. When I left the house the other day and got to the car and realized I had forgotten my keys, I burst into tears. Just the thought of all of that wasted effort was overwhelming.

I am still doing almost everything I did before. I still go to work, do the shopping, cooking and cleaning. But now I have to ask for help with all of it. My co-workers see me pull up in the mornings and they come out to help me with the door and carry my coffee in for me. My sister cooks for us sometimes. My kids do a thousand little things that my persnickety self wants “just so”. Tom has taken over more than half of the shopping and cooking and all of the laundry. Nick has learned how to make my evening cup of tea.

Everyone has stepped up to help out. I appreciate that so much. But I am an independent person; I want to be able to do it for myself! It is hard to let go of the control. I am trying so hard to deal with this. Everything else is so good; the cancer has not come back, my family is healthy and happy and closer than ever, we have everything we need and most of what we want. And yet, I still dream of walking. Every morning I wake up with a glad heart and think, maybe today will be the day I will walk again! Then, I stand up and the pain tells me no, not today and my heart sinks again.

So I dream of walking. The freedom, the joy.

And I keep holding on…

MRSA MRSA Me. . .

The fun never seems to stop. As I've mentioned before, my surgery site wound has been open now since April, 2008. Having an open wound for 19 months is not only a chore, but a constant reminder of my condition and the ravages that cancer and treatment can cause. In late October I went under the knife once again so that my orthopedic oncologist could stimulate healing of the wound through debridement - scraping the wound site and removing a small piece of dead bone to send to the lab.

Yes, the lab agreed that the bone is dead - killed by radiation, and the doctor concluded that this is why no skin and tissue is growing over it. The lab results also came back positive for MRSA - Methicillin-resistant Staphylococcus aureus, a bacterial infection that is highly resistant to most antibiotics. Terrific. Not only do I have dead bone, not only have I resorted to using a walker due to pain and weakness, but now I have a potentially life-threatening staph infection! I keep waiting for the other shoe to drop, but instead I'm finding myself under an avalanche of shoes without the agility or ability to duck or find cover! Okay, as if that extended metaphor wasn't enough - how's this "When is all this going to stop?!?" Frustration is the word of the day around here, but there is good news: Today marks my LAST I.V. antibiotic treatment after six weeks of daily - yes, daily I.V. antibiotics. Thank God I've got my Mediport to accept all this medication!

My quarterly MRIs are coming up this month as well, so stay tuned. Sorry for sounding so down-hearted, but notice how I haven't complained too much lately? Believe me, it's been building! My loving and supportive family has been here by my side and such a wonderful comfort during these times. My husband, who I don't think has ever truly learned to do laundry, has taken over so many household tasks and guess what? - The house is still standing! Love ya honey, but you still have to learn how to separate the colors from the - oh what the heck, it's getting done! :)

More soon - I'll be sure to let you know how the scan results come out.

Keep hanging on!

Ema

Clear Scans and Back to School Drama

Back to School time is hectic, ask any parent. We have three kids so the forms, schedules, meetings and fees are multiplied. Then there is the emotional landscape we have to weave through. Sam has started kindergarten and the change has not been smooth.

We are handing out love and discipline in equal doses. Juliana is in class with her best friend, idolizes her teacher and just loves school. Thank goodness! She does have a tendency to get dramatic and overwrought so we are trying to keep things on an even keel for her. She burst into tears last night as she was reading “The Tale of Despereaux” because the mouse’s brother was being so mean to him. “How can he do that? That’s his family!” she cried. After some cuddles and reassurances that there will be a happy ending, she was fine.

Nick is doing great but has at least three hours of homework every single night. He is really stepping up though and is impressing us with his commitment to his responsibilities. However, there is barely enough time in the day to get everything done. Again, this is familiar territory for most parents.

Throughout all of the chaos, Tom and I are breathing a sigh of relief. I had my CT scan and MRI earlier this month and they came back clear! Last year at this time we weren’t able to make it to Nick’s Back-to-School night because I was having surgery. This year we will both be there. I am still walking slowly and am in pain but it’s getting better all the time. We’ve got so much on our plates but it doesn’t feel bad. This is all the good, normal, healthy commotion of living. I can so handle this!

August Update

It's been a while since I've posted anything, so I thought I'd give a quick update. Still cancer-free! Quarterly MRI and CT scans are next month, so we'll undoubtedly have another anxious week or two while we wait for results, but with each round of tests, I think we fare a little better.

That's not to say we've let our guard down though. We realize that our lives post-cancer will never be the same as prior to my diagnosis two years ago. Although this is my second battle with cancer, the first being Hodgkin's disease some 16 years ago, the reality of a relapse seems more tangible now, more possible. Plus I have three children now that I didn’t during my first battle.

Neither Tom nor I try to stifle our fears, rather we do our best to keep them in their place, to quiet them as we move forward. Fear doesn't rule our lives anymore as it tried to do when we were in the thick of things. To say that each day gets a little easier would be an exaggeration. Each month - yes, I think we feel a little better as the months go by and the gap between me and my cancer widens.

My leg has not yet fully healed, believe it or not. The hole that reached to the bone just a couple of months ago looks to be filling in from the inside, but I still have to keep a dressing on the wound. Having an open wound for 15 months is a constant reminder of the cancer, and there's only so many times I can remind myself that "at least I still have a leg," before that too becomes tiresome. But - it's true, and through the pain that still plagues me with each step, this tedious mantra is all I've got for now. Well, that's not entirely true.

My husband brought home a recumbent exercise bicycle a couple of weeks ago and I've been on it every day. The first time I got on it I could barely make one full revolution of the pedals. Then, within a week, I was up to 25 revolutions. Now it's 50, and each day it's getting a little easier. Our hope is that, without the current aid of a physical therapist, this bike will encourage greater range of motion, increased circulation, and promote better venous return. Just riding it encourages me daily as I feel empowered that I'm doing something positive toward helping the leg other than just walking.

I'll write another post after our next test results next month. In the meantime, keep hanging on!

Midnight Mayhem!

I am enjoying the moments with the kids even though I'm going crazy. I can't believe how fast they are all growing up. The only one who still has that baby softness is Sam, and he's such a whirling dervish most of the time!

Last night at midnight, he came in to say he didn't feel so good. Then, of course....BARF!!! All over the floor and splattered on the bed. Then he stepped in it and slipped and I went to help him and I slipped too. So Tom lifted Sam out over the mess and deposited him in the tub. By then I had extricated myself and headed to the bathroom to clean up Sam and myself. So we spent the next 1/2 hour cleaning up and comforting Sam, mopping up, pulling the bedding off, starting a load of laundry, all with the back doors flung wide open and the fan on high to get rid of the smell.

Then I covered the bed with soft towels, brought Sam into my bed with the bucket nearby, crawled in and collapsed. Luckily he fell right asleep and slept right through. He woke up this morning feeling fine, full of sunshine, thank goodness.

One of the things that battling cancer has given me is a bit of perspective. I won't say that slipping barefoot in vomit is fun, (and don't let anyone else tell that to you that either :), but simply being well enough to take care of a midnight emergency like that is something that I'm eternally thankful for. I hope to keep that kind of appreciation forever and make it a part of who I am.

Until next time. . . Ema

No News is Good News

No news is good news! Sorry I haven’t had time to post any entries lately – things have somewhat hectic here, and I’ve had to put off all but the most crucial tasks. No bad news at all, so there’s good news, and more good news. First and foremost, my last scans came back clear. Two weeks ago I had an MRI and a full, head-to-toe PET scan looking for metastasis, and both came back fine. There’s still residual “activity” in my leg, the site of the tumor, but nothing unusual considering the fact that it’s still trying to heal. The MRI results came back in three days, but the PET scan took a full week, and Tom and I were incredibly anxious. Anyone who’s waited for test results knows just how nerve-wracking it can be, especially if the results are taking longer than you expect. We were convinced that they had to send the PET scans to twelve hospitals to get more opinions, or simply ran out of pens as all their ink was used up circling “suspicious” areas! I think there’s a point where hoping for the best, preparing for the worst works fine, then once the preparing for the worst starts to occupy all your thoughts – not good.

I just finished my 27th “dive” in a hyperbaric chamber as part of my wound care regimen. These dives were daily – five per week, at two hours each. When you factor in driving in traffic, that was more than three hours each day for five weeks. . .did I mention that I’m glad those are done??? Anyway, the increased air pressure in these chambers forces oxygen into your body, thus promoting healing. The wound responded well, and is almost healed. There’s still a hole, about the diameter of a pencil, that hasn’t closed up yet, but they tell me it will in time. I hope so, as it’s been 13 months now since the surgery that caused the wound in the first place. Yes, I’ve had an open wound for 13 months now. . .Wow. . .That’s the first time I looked at it that way.

BUT – All this complaining must be leading to something – right? Right. I’m alive, and as crazy as life has been lately, it’s also been full, vivid, and rich. We just celebrated my oldest son’s 12th birthday yesterday and it was great. We have two summer vacations planned including an Alaska cruise that we all can enjoy knowing I am, for the time-being and God-willing forever, cancer-free!

Until next time. . .

The Curious Case of Benjamin Button

We saw "The Curious Case of Benjamin Button" this evening. It was a lush, full, gentle story and I loved it.

It reminded me that we are ourselves throughout our lives. We grow, change and mature; yet we are still our essential selves all along. Our body is not who we really are. It is what carries us through the many adventures of life, but at some point it lets us all down.

I have felt betrayed by my body in many ways over the past year and a half. I have had my strength and vitality yanked away from me like a rug from under my feet. I am scarred and I limp and I hurt. But I am still me. I feel the same inside; still looking out from the same eyes.

Our society places so much emphasis on youth and beauty. I don't know many people who are gorgeous but I am fortunate enough to know so many people who shine with such deep goodness, fun and honesty. My life is beautiful, joyous and satisfying. So what if I look like I've been through the wringer, been dragged around the block a few times – I have! But I'm still here and so grateful. My body may no longer be a wonderland but it's no house of horrors either. It is a treasured vessel that carries my vibrant soul. I hope it will carry me a lot further.

It is a rare movie that can tell you a story that takes you far out of yourself but then returns you gently back home; thankful to be here. "The Curious Case of Benjamin Button" is such a movie and I highly recommend it to you!