Breathe In, Breathe Out

Feelin' Fine!

noreply@blogger.com (Unknown) — Sat, 23 Aug 2014 04:14:00 +0000

It's been so long since I've checked in with this blog and I'm so pleased to say that I'm doing just fine. This month marks seven years since my diagnosis and I've been cancer-free ever since the tumor removal in September 2007.

Life takes on a different character after you battle this disease and each passing year gives you more promise that you'll live as long and healthy as you've always wanted. It's all we want, really, to live a "normal" life. None of us come into this world expecting to live to be 120, but when something profound comes along that threatens to steal dozens of good years away from you - YOUR years that you've counted on, that your family has counted on, it forces you to take a radical new perspective on what your life may now be like. If you're fortunate enough to beat this disease, the rest of your life doesn't simply open back up again, uncoil like a compressed spring being released. Instead, you're afforded a little bit of your life back at a time - a little more hope with each passing month, each year. This is a way of protecting yourself, but also a recognition of the new life you've been given. It's not the same life you had before, where old age was the expected scenario. In this new life you've been given the gift of perspective on how to live with future uncertainties and on just how precious each day is.

About a year ago, I sat across from my oncologist during a checkup and he put down my thick chart that is literally the size of a big city telephone book, and looked at me. He smiled, held out his hands and took mine in his, then said, "I am proud of you. You look so good, so happy, and you're living your life again - finally. The way we want to see all of our patients live their lives after their battles." I smiled in agreement, sharing this pride, realizing how sincere his words were and how deeply they resonated with me and this journey.

We are all in this together. Whether you're in the midst of your fears within a battle that seems so huge that you shudder with every thought about getting through your day, to those who have won the cancer battle and moved on to all the other battles we wage in our lives. The doctors are here too, and our families. This is who we are now - forever changed, forever united, we muster through and somehow persevere.

Moments of Grace

noreply@blogger.com (Unknown) — Mon, 26 Sep 2011 13:01:00 +0000

I met a woman in my doctor’s office this afternoon. I was there having my port accessed so I could go over and get my MRI. She was there because she had recently been diagnosed with breast cancer. She was asking the nurses questions about what to expect. The subject of ports came up and I told her about mine. That led to many other questions and we all talked for quite awhile. There are so many questions at the beginning of the cancer journey and far too few answers. The answers that you do get are often contradictory and vague because no two people experience everything in the same way. These are not the types of answers that you want at that time. You want someone to tell you exactly what it will all be like and most importantly, that everything will be just fine. You don’t want to hear someone else’s horror stories but you would like to learn from other’s mistakes. You don’t need to be reminded that you need to look on the bright side (where is that side again?), from the optimistic pollyannas who assure you that you will beat this thing, if you just decide to. Sure, you are planning on beating the cancer, but you can’t just completely ignore that scary little voice that whispers, “what if? what if?”. So I say, ask lots of questions. Take the answers you receive and filter them. Keep the answers that work for you and let the others slip off. Feel free to ask; some won’t want to talk about it, but for others it feels good to share experiences. It always makes me feel good when I can ease someone else’s mind by letting them know how it went for me. At the very least, it reminds us that we are not alone, even in the darkest hours.

After my port was accessed and the lady and I hugged goodbye, I went over for my MRI. Once I got there I was informed that they were running two hours behind (shocker.), so I headed home for a nap. But I couldn’t fall asleep. I kept thinking of the woman from the doctors office. She seemed so brave and strong standing there facing down a den full of lions. I was proud to stand by her side for a moment, lending a shoulder to lean on. So I dug through my bookshelf and found my favorite book on cancer, “There’s No Place Like Hope” by Vickie Girard. I wrote a little note to go with it, wrapped it with a ribbon and took it back to my doctors office. I asked the receptionist if she would give it to that lady and she assured me that she would. It was nothing big, it might not mean much, but for me it was a moment of grace and I’m glad I followed my heart to it.

All Clear!

noreply@blogger.com (Unknown) — Mon, 14 Mar 2011 03:25:00 +0000

The results are in and I am all clear!

My MRI scans of my chest and leg came back and I am NED (no evidence of disease), which is so wonderful, such a relief. It feels like I'd been holding my breath for a week. So, no more scans for six months. I can go back to vacillating between completely forgetting all about cancer and the hypochondriac tendency of wondering if each ache and pain is actually a horrible relapse.

Things have gotten better with my mobility also. I have actually walked off without my cane several times now. I have to tell the kids to go run around the house and find out where I left my cane this time. It's usually propped against the wall in the kitchen or leaning against some clothes in the closet. I do still need it when I am outside where the ground may be uneven, but indoors, I am good without it.

I still wear flip-flops nearly all the time but have managed to fit my foot into a ballerina flat on occasion. Of course, I would wear flip-flops and ballerina flats nearly all the time anyway. But I do miss being able to wear some high-heels every now and then. High-heels automatically give you that sexy-girl attitude. Flip-flops and a cane do not. In those instances though, I just put on a lower cut blouse and call it a day.

Finding my Happy Places

noreply@blogger.com (Unknown) — Tue, 22 Feb 2011 13:24:00 +0000

It's that time again. Time for the MRI scans.

I went in this afternoon and spent two hours in the tube so they could scan my chest and my leg, with and without contrast, looking for metastasis.

An MRI tube is a scary place to be. It's tight and enclosed and incredibly loud. Your instincts tell you that anything that loud and frightening is somewhere to get away from immediately. After I tamp down my fight or flight response, I spend the next twenty minutes keeping claustrophobia from slipping into the cramped tube with me. She's a sneaky phobia but keeping my eyes squinched shut helps.

After my heart stops racing and I relax a little, I am able to go looking for my happy places. I have many of them and they are a great comfort to me especially during times of medical distress. I ease in with some lovely thoughts of sex and chocolate, then after I am sated with those, I start decorating my cozy mansion overlooking the sea.

Travels to the rocky coast of Ireland, swinging in a hammock on a beach in Aruba, reading books in my garret tower on a storm tossed afternoon, then back for a little more sex and perhaps some baked goods this time and before I know it I am being woken from my half-doze as the tech comes in to release me from the tube and send me on my way.

Now, I just have to wait a few days for the results. While the tube is uncomfortable, the waiting can be nearly unbearable.

I'll post the results soon; now excuse me while I go back to my happy places.

Know thine enemy.

noreply@blogger.com (Unknown) — Wed, 19 Jan 2011 03:23:00 +0000

Tom gave me the most romantic book for Christmas! Not really. He gave me a book called "The Emperor of All Maladies" by Siddhartha Mukherjee, which is basically a biography of cancer. Not romantic, but still engaging reading.

I usually read in the evenings, after the kids are in bed and the house has quieted down. However, with this book, I found myself picking it up every time I had a free moment at any time of day. I devoured this book because it really hit home.

Not only have I had two rare cancers in my lifetime (Hodgkin's Disease when I was 25 and Sarcoma when I was 40), but my mother battled breast cancer twice, lived for many more years and then finally succumbed to myelodysplastic syndrome which developed into leukemia.

So I have truly been there. I have sat in the doctor’s office feeling dizzy from the blood draining from my head and the overhead florescent lights becoming too bright to bear as I had to absorb the terrible news coming from the doctor’s mouth. I have tried to relax in the recliners in the chemo room as the nurses searched for a vein to start the poisonous drips. I have run my fingers through my hair and pulled away handfuls of hair and dealt with sudden onset baldness not once but twice. (The second time was easier, comparatively speaking.)

I have lived with cancer for a long time but I never really understood the disease and how our attempts to cure it have evolved. After having read this book, I have a more comprehensive view of it than ever before. I have lived it physically and emotionally, now I have a grasp of it intellectually.

One of the things in the book that really surprised me was how chemotherapy is a relatively new field of medicine. Cancer seems to have been around as long as people have been; the first documented case is from Ancient Egypt around 1500 b.c. Doctors and researchers have been fighting it all along but there was little comprehensive effort and no serious government involvement until after World War II.

Over the years, when possible, cancer was treated with surgery. Radiation came along around the turn of the century but wasn't really refined until the 1960's. Chemotherapy came after that.

So modern oncology has only been going for about 50 years. For some reason, I had thought that we were so much further along with oncology. When actually, it’s not that much older than I am.

I know that I was lucky to get my Hodgkin's Disease when I did because of the new treatments that cured me and preserved my fertility - unheard of even 20 years prior. Hodgkin's Disease treatment was a wonderful success that has been difficult to duplicate with other forms of cancer. We have come a long way in these 50 years of modern oncology but we still have so far to go.

All the while I was reading this book, I was hoping for the happy ending. Mukherjee does end the book with hopeful ideas of where future cancer treatments may lead us, but as of yet there is no magic bullet. The best we can hope for right now is to still just keep holding on...

Check out Zunaira's blog: I Need a Leg

noreply@blogger.com (Unknown) — Sat, 23 Oct 2010 13:03:00 +0000

Have a sarcoma story you'd like to share? Leave a comment with the story or a URL of your blog.

Here's one that came to us yesterday. Please visit Zunaira's blog HERE.

*** *** ***

In early March 2010, Zunaira found out that she had an aggressive form of cancer in the connective tissue of her left thigh; it’s called Sarcoma. Her insurance company, Aetna Insurance, is covering 80% of the medical treatments, and her share is already upwards of $15,000. The company actually tried to drop her from coverage but was unsuccessful because there was no documentation of a pre-existing condition.

Zunaira valiantly fought off the cancer and had her leg amputated.

GOOD NEWS!

noreply@blogger.com (Unknown) — Wed, 04 Aug 2010 03:10:00 +0000

Glad you stopped by today folks because have we got a deal for you.

You say you like good news. You say you like to hear about nice things happening to nice people.

Well, step right up sonny, because I’ve got what ya wanna hear.

For starters, howza bout this?

The walker has been put up into the attic! That’s right; no more walker around here. I’m the one walking so look out! Woo Hoo!

I have been using my lovely quad-cane for over a month now. The quad-cane is what the old man, Carl, used in the movie “Up”. Although his cane had tennis balls on it, I haven’t progressed to that point yet. I don’t like having to use the cane but let me tell you, what an improvement on the walker! Plus, I’m able to use the stationary bicycle for my physical therapy again, so look out!

But that’s not the only good news around here lately… We’ve got more!

I am infection-free! That’s right – Kiss me, I’m not infected!

Doesn’t sound as good as Kiss me, I’m Irish. But you gotta work with what you’ve got.

I have been off of the high-dose i.v. antibiotics for over three weeks now and so far, the infection has not returned. Yippee!

That’s great, you say, but you say you still want more??? Well step right up because we have got a full package for you here today. In addition to all of this great news, we have something else; yes, wait – there’s more! My wound has finally closed! Yee Haw! Yes folks, I’ve got a big old beautiful scab right on that wound and that thing is sealed up tight!

Now, how much would you pay for this great news? But wait, there’s more! Act now and we’ll double your offer – that’s right TWICE AS MUCH GOOD NEWS! For three easy payments plus shipping and handling you’ll get good news for me, good news for you, good news for your little dog too.

Now, is anyone interested in a Veg-o-matic? I’m on a roll….

It’s hard to keep your mojo going when you’re rockin’ a walker

noreply@blogger.com (Unknown) — Sun, 28 Mar 2010 02:49:00 +0000

Yesterday I cast my walker aside and walked with just my cane. True, it was only for a little while and then the pain was too much again. But it was still a huge leap for me, a delicious taste of freedom and liberation.

It’s been another long year of pain and recovery. We look back – trying to remember when my leg took a turn for the worse. Tom and I remember how unexpectedly hard it was for me to walk around during our cruise last July. Then the next month, August, and our vacation in Santa Barbara. I remember being so proud that I could walk along a path for a short time without resting, but the pain and swelling were getting worse, not better. Then September came and another debridement, but the recovery brought no relief and the pain worsened over the next month until October came and the cane was replaced with the walker. The pain was unbearable.

It wasn’t until November that we got the diagnosis of the infection – MRSA, and the fractured tibia. Still, we didn’t put the timeline together or realize just how long the infection had been deteriorating muscle, weakening the bone, and delaying healing of the wound itself. At the time we didn’t think that a cancer recurrence could also cause these problems, which it surely can. We learned that scenario in February from a doctor with the UCLA sarcoma team. He saw the leg when healing was finally taking hold and therefore he pretty much ruled out a recurrence. Thank God we didn’t have the cancer scenario on our minds or that dread compounded with the day-to-day pain would have made matters even worse. It’s a classic case of where a little ignorance went a long way.

I’m still on daily i.v. antibiotics (five months & counting). My infectious disease doctor wants me to stay on them until the wound closes completely, which he predicts should be only a week or two, (of course he has said that for the past few months). It’s hard to imagine that this open wound, which I’ve had for 22 months now, will ever heal, but I watch it daily and it does seem to be doing just that. The infection kept the wound from healing for how long? A year? Who knows; but that is behind us now.

I’m still working to get my energy back. I’m thinking that these ultra-potent antibiotics might be zapping my strength. But I also realize that moving at one mile-per-hour for the past six months may have something to do with my loss of conditioning.

We had our family dance party last weekend where we blast the music and rock out and try to embarrass each other. I had been on the sidelines, cheering everyone else on for quite awhile now. But this time I was finally able to stand up and join in again. It is truly hard to keep your bitchin’ self going strong when you are rocking a walker. But now I am starting to feel my mojo again.

Baby, it feels good!

Last night I dreamt I could walk.

noreply@blogger.com (Unknown) — Sat, 19 Dec 2009 03:57:00 +0000

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. . .

noreply@blogger.com (Unknown) — Fri, 11 Dec 2009 03:33:00 +0000

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

noreply@blogger.com (Unknown) — Thu, 17 Sep 2009 11:48:00 +0000

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

noreply@blogger.com (Unknown) — Wed, 12 Aug 2009 12:17:00 +0000

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!

noreply@blogger.com (Unknown) — Mon, 01 Jun 2009 00:11:00 +0000

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

noreply@blogger.com (Unknown) — Thu, 21 May 2009 12:06:00 +0000

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

noreply@blogger.com (Unknown) — Mon, 12 Jan 2009 04:21:00 +0000

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!

The Easiest Way to Help Find a Cure

noreply@blogger.com (Unknown) — Sat, 13 Dec 2008 03:43:00 +0000

Hi Folks! Feel the urge to somehow ‘give back’ to humanity, but simply don’t have the time? Got a computer that’s powered on most of the day, but not always in use? Then let your computer(s) donate their time instead! Step on up and join The Unreal OC team on World Community Grid.

If you're already a member of WCG and want to join The Unreal OC team, then click HERE.

If you'd like to join WCG and become a team member of The Unreal OC, click HERE.

World Community Grid's mission is to create the largest public computing grid benefiting humanity. Donate the time your computer is turned on, but is idle, to projects that benefit humanity! The WCG (World Community Grid) provides the secure software that does it all for free, and you become part of a community that is helping to change the world. Once you install the software, you will be participating in World Community Grid. No other action must be taken; it's that simple!

As of this posting, there are over 417,000 members of WCG with over 1,130,000 devices (computers) donating time on the network, worldwide.

Ema and I are donating CPU cycles during the times our three home computers are on, but not in use, to Help Conquer Cancer, which is just one of the programs offered through the WCG. But, as you’ll see from the WCG Web site, there are other humanitarian and scientific projects that you can choose from as well.

Choose your cause, download the free software, and you’ll automatically become a member of The Unreal OC team!

I’ll post periodic status reports on this blog, but you can also visit the WCG site anytime to see how our team is doing and to check your individual contribution.

And by the way – tell a friend! Anyone can join WCG, and The Unreal OC team. Once we get about a dozen members we can join in on team challenges, but more on that later.

Ema and I will be talking more about this during our next podcast, but you can also send us an email with any questions and we’ll be happy to help.

Thanks!

~Tom

How Grid Technology Works
Making a difference has never been easier! Grid technology is simple and safe to use. To start, you register, then download and install a small program or "agent" onto your computer.

When idle, your computer will request data on a specific project from World Community Grid's server. It will then perform computations on this data, send the results back to the server, and ask the server for a new piece of work. Each computation that your computer performs provides scientists with critical information that accelerates the pace of research!

World Community Grid runs on software called BOINC (Berkeley Open Infrastructure for Network Computing,) developed at University of California, Berkeley, USA with funding from NSF (National Science Foundation).

Wound Care - Looking Better Day by Day

noreply@blogger.com (Unknown) — Thu, 11 Dec 2008 02:43:00 +0000

That's the medi-cart that our wound care nurse brings with her each week. It's been seven months now since Ema's last operation. Just a little clue as to how long it takes for an open wound to heal after the area has been exposed to radiation therapy. The pain isn't as severe as it was a month ago - thank God for that. Her leg is still swollen though and the venous return issue is still with us. Fluid can't return up the leg like it once did, so it causes swelling throughout the feet and ankle. Elevating the leg helps some, but as soon as she stands up the swelling starts again. This is a long-term issue, and we hope to get physical therapy after the wound heals completely.

If you're at all interested in listening to Ema and I bantering about her cancer battle, and our lives in general, check out The Unreal OC.

Back soon - Tom

All the small moments

noreply@blogger.com (Unknown) — Wed, 22 Oct 2008 12:26:00 +0000

Things I did this weekend:

9 loads of laundry
1 trip to the Farmer’s market
1 trip to the grocery store
Put everything back where it belongs, several times
Dragged out a storage box of old toys because the kids were bored. They were so excited to see their old toys again they forgot about wanting to go to the toy store.
Got the Halloween costumes ready
Refilled the birdfeeders
Watered the garden
Made two meals from scratch and heated up four others; two meals that the kids actually liked
Bought 5 new work shirts for Tom, a sweater for me, a dress for Juliana
Read 3 bedtime stories
Sliced a pound of grapes in half so no one would choke
Kissed boo-boos
Cleaned the junk out of one cabinet
Tried to keep a good attitude even though the pain from my leg is very difficult
Took the kids to the library and showed Juliana how to approach a librarian for help with finding a book
Gave Sam & Juliana each a bath
Made sure Nick took a shower
even the dog got a bath
Read through the measures and filled out my mail-in ballot
Washed many, many dishes
Bought two new rose bushes and sweet-talked Tom into planting them
Cuddled every child, a lot
Finished my book
Chased a skunk out of the house, without getting sprayed
Watched some of my backlog of Tivo-ed shows
Made happy memories with the kids involving Dairy Queen ice cream

sundaes and lots, but still not enough, napkins

Paid bills
Cleaned up several messes that I saw coming but was unable to avert
Helped with homework
Drove all over town at least twice
Sewed up a hole in Nick’s beloved stuffed animal
Gave my family all the love I could give

This is why I am terrified that someday I might not be here for my family. I do so much, I can’t even think of it all to list it down here. And it’s not enough. I need to be here to take care of them, for as long as they need me. Which is a long time. I’ve worked so hard to give the kids happiness, strength, comfort, guidance and love. I pray every night that I get to stay here to finish this job I’ve started. I’m doing a good job; I just want to see it through.

It's not just the chores - the running around town looking for the right witches broom for Juliana's Halloween costume, or picking up the dry cleaning. Tom could do that. It's the smaller moments, the attention and devotion to each child that they will someday recognize as the love that only a mother can provide. Yes, it's the big picture, the whole tapestry of motherhood that I'd miss, but it's in my prayers I ask for a long life filled with those small moments. In the meantime, well, the meantime is where I live each day, and I'm happy to say that so far, my prayers are being answered.

Wound Care and Far-Reaching Messages of Hope

noreply@blogger.com (Unknown) — Sun, 12 Oct 2008 14:39:00 +0000

Ema has a wound care nurse that comes once a week to check on her surgery site on her leg. The nurse is very kind and helpful, making sure we have the supplies we need to tend to the wound as well as educating us on the proper care. We are seeing progress in this area - no details here, but the wound is finally starting to heal! The pain in her leg is still bad though, and we are seeking a convenient physical therapy option.

It's been an amazing year. "Traumatic" is the first word that comes to mind. Being able to share these journal entries with everyone has been such an important part of coping with all of the stress. It's heart-warming to see that this blog not only gets regular visits from our family and friends, but also from people all over the world. Whoever you are in Finland that keeps checking the site - hello!

For all of you fighting the fight of your lives - keep it up. Or as Ema would say, "Keep holding on."

Until next time. . .

Update - Scan results and another trip to the hospital

noreply@blogger.com (Unknown) — Sat, 27 Sep 2008 21:46:00 +0000

Great news - the MRI of Ema's leg and lung CT scan both came back clear! Although the leg MRI still shows a lot of activity in the site of the former tumor, there's no evidence of cancer at all. This is an area that we will keep an eye on as we continue to get scans every three to four months. The clear lung CT scan was a huge relief as sarcomas travel to the lungs first, statistically anyway.

Ema and I went to Orange Coast Memorial Medical Center on Thursday to have her wound surgically debrided and the old stitches removed. Yes, she had to go under general anesthesia for this - who wouldn't opt for sleeping through that trauma?!? The wound is closing up towards the top but it still open to the bone towards the bottom. Ouch! Anyway, her surgeon recommended a wet-to-dry dressing change every 24 hours. I'll spare y'all the gory details - suffice to say it's a rather unpleasant and potentially painful way to tend to a wound, but it's necessary to allow oxygen to enter the site so the wound can heal from the inside-out. The wound care specialist will be at our house on Monday to help with this too. We're hoping that once this wound heals better she will be able to walk better. She's still having such a hard time getting around and is very frustrated with it.

Now, with these scan behind us, we don't have any more MRIs or CTs to worry about until after Christmas! Yay! Life is still so challenging but we're not so terrified right now. Which is such a blessing!

Keep Holding On - Ideas and Suggestions from Ema - # 4

noreply@blogger.com (Unknown) — Sat, 06 Sep 2008 19:53:00 +0000

*** Be kind and gentle with yourself. This is not the time to berate yourself for anything. This is a hard time. Treat yourself like you would your best friend; forgive yourself your mistakes, encourage yourself to hang in there.

*** If you can’t get in right away to see a doctor or have a procedure, feel free to call them to ask if there have been any cancellations. Ask politely and keep calling everyday. When you are in the middle of all of these doctor appointments and procedures you just want to get it done and get the answers you need. Everyday that you have to wait is torture and weekends are endless while you wait for the offices to open back up on Monday morning. Force yourself to be the considerate but squeaky wheel.

*** Very often people will have trouble knowing what to say to you in response to hearing about your cancer. Sometimes they will blunder and say something that comes out insulting or dismissive. Try to ignore the awkward words and see through to the friend who is struggling to comfort you the best way they can. Not everyone is able to express themselves well but you can tell if their heart is in the right place.

Keep holding on…

~Ema

Keep Holding On - Ideas and Suggestions from Ema - # 3

noreply@blogger.com (Unknown) — Sat, 09 Aug 2008 01:47:00 +0000

Here are my recovery ideas and suggestions for this week:

*** Start a journal. Nothing fancy, just a place to describe your
journey. I'm not big on the "Dear Diary" type of journal. Instead I just note down my procedures and how I'm feeling. That way I can look back and see that yes, I actually have made a lot of progress even though it seems that the recovery goes so SLOWLY…. Also, it's a good place to complain, fret and vent so that I don't wear out my support people.

*** While you want to be as well informed about your disease as possible, be very careful about going on the web to research. Do your research when you are feeling strong. It is incredibly easy to get discouraged and terrified reading the data that is out there. Remember that some of the information on the web is outdated. The statistics may not be as positive as you'd like but consider that they aren't able to take into account all of the great things that you are personally bringing to this fight (like your tenacity, optimism, general good health, etc.). You can even ask a friend to go online for you and filter through the data and bring you back the good stuff. Go over this information with your doctor, letting him know that you are being pro-active with your recovery.

*** Friends will ask how they can help. It was hard for me to think of things to ask for. There were so many things I needed help with, but some of the stuff was just too personal. I really needed help with keeping up with the laundry but could never bring myself to ask a friend to come over to do a few loads. I would've loved for someone to step in and take a couple of needle sticks for me or hey, how about sitting in for this round of chemo – I'm getting pretty tired of it –
but nope, doesn't work that way. Finally I figured out some smaller things that helped a lot.

* Bring me a good escapist movie or a book
* Drop off some magazines that they're finished with (I loved magazines during treatment – easy to look at when you're feeling loopy or just tired)
* Provide dinner for our family next Tuesday.
* Pick up a prescription from the pharmacy for me.
* If you're going to the grocery store give me a call - I probably need milk & bread too
* Take my kids to a movie or to play at the park
* Bring me some fresh fruit (and some candy!)

Even though I didn't want to impose on anyone, I realized that by allowing friends to help me, it empowered and comforted them at the same time it truly did help me. You will feel cared for and they will feel good about themselves. Win-win situation.

Keep holding on…

~Ema

Keep Holding On - Ideas and Suggestions from Ema - # 2

noreply@blogger.com (Unknown) — Sat, 02 Aug 2008 11:56:00 +0000

*** Start a blog and let all of your friends know about it. That way you can keep everyone updated easily. It is much easier to communicate the latest updates on your health this way than to phone or email everyone separately. Your friends will understand and if they don't, too bad. You do not have to make everyone else happy right now. You have to take care of you.

***Think about getting a portocath (same thing as medi-port) implanted. It has made a huge difference for me. I am a very difficult needle stick. Now I don't dread procedures as much and the chemo experience was much easier for me.

***Things to bring with you if you have to go the hospital:
* Your medical cards, id card, list of medicines you're taking
* A picture of you with your friends and/or family (It's a comfort for you and Ithink it's a helpful reminder to the medical staff that you are a real person and have a lot to live for!)
* Your own pillow. It was reassuring to me to have a bit of my home with me like that.
* Books, magazines, ipod stocked with music and podcasts (don't forget TheUnrealOC!), Gameboy, puzzle book, etc. (Take one of these to each appointment or procedure too. There is so much "hurry up and wait" with this process. If you have something you enjoy to distract you it will make a big difference, and you certainly don't want to rely on the magazine selection in the Doctor's office:)
* Your personal hygiene stuff
* Slippers. The floors at a hospital are not fun for bare feet.
* An eye mask to block out the light if you want to sleep during the day.
* A small bowl filled with little candy bars. Put a sign on it saying "For everyone who is taking such good care of me! Thank you and help yourself!" Everyone likes to be appreciated and again you are reminding them that you are a real person, not just another patient.

More coming next week -

Keep holding on....

Keep Holding On - Ideas and Suggestions from Ema

noreply@blogger.com (Unknown) — Thu, 24 Jul 2008 03:25:00 +0000

I've been thinking of what I wish I had when I was first diagnosed with this disease. I felt like I was flailing around, terrified and alone. So I thought I would make a list of my ideas and suggestions for the newly diagnosed. These are things that I read about or - surprise – thought of myself, that have helped me through this journey. I will keep adding to this list and blog them for you every week or so.

Here are some of the things that have helped me…

*** Keep in mind that THIS is probably the MOST terrifying time right now. You've just been handed life-altering news and while you know it's bad you don't know how bad. Most likely the doctors are giving you vague ideas about general scenarios but no one will commit to any big decisions because they just don't know yet. You will need a lot more procedures like MRIs, CT scans, biopsies, etc. to pin down your diagnosis and then to make a plan of attack. Realize that it is easy for your mind to go down the darkest road because you don't know what is truly in front of you. Try to keep off that road as much as you can. Yes, you do need to prepare yourself for some difficult times but you will accomplish nothing by scaring the heck out of yourself.

*** Schedule some worry time into your day. Tell yourself that at 10am (or whatever time you can have a quiet moment) you will sit down and for 20 minutes you will worry about everything that could possibly happen. You can list it out and go over it with your doctor at your next appointment. Sometimes my worrying did bring up some important issues that needed to be addressed. But by limiting myself to this scheduled "worry time" I was forced not to obsess over it, all the time. When I found myself worrying at another time, I made myself shove it to the back of my mind until the next "worry time". The worst time to worry is at bedtime. You are tired and vulnerable then. You need to think about the scary things when you are feeling strong and ready to kick some butt. Jai Pausch said that it helped her just to say "not helpful" to herself when she found herself thinking the bad thoughts late at night. You have control over so few things in this process but fortunately you do have control over the MOST important thing; your own thoughts.

*** Ask your doctor for an anti-anxiety medicine. I had ativan. I didn't take it very often but it was good to know I had it if I was really getting freaked out. This is a very scary time. Don't be afraid of a little help now and then.

*** Start a recovery binder. Get a business card from every doctor and facility you visit and keep them in the binder. Make a log of every scan and procedure; it's easy to get confused after you've had a dozen scans and forget which was done on what part of the body and at what facility. Keep a calendar and copies of your reports in here. This binder is great in a few ways: being organized is empowering in an otherwise chaotic time and there is no one who is more interested in your care than you. You are important to your doctor but you are one of his many patients. You are YOUR only patient. You need to keep on top of your care and this will help you do it. Take this binder with you to your doctor appointments. Not only will you often need to refer to the binder when speaking with your doctor, but your doctor will see that you are serious about keeping organized and this impression may prove important to the overall climate of care you receive.

These are just some ideas and suggestions. Feel free to take 'em or leave 'em. I'll have more next week. I do hope that they help you through these tough times. Remember courage is just holding on a moment longer. Keep holding on....

~Ema

What a week!

noreply@blogger.com (Unknown) — Tue, 22 Jul 2008 12:37:00 +0000

The MRI was originally supposed to reveal whether we had something to worry about regarding the hard, painful lump ABOVE the kneecap. What we weren’t expecting was that the radiologist who read the MRI saw an alarming mass BELOW the knee at the site of the original tumor! Take a breath now, this story has a happy ending.

The discovery of a possible “recurrence,” as the radiologist reported, sent Ema and I into immediate alert. This surge of panic sent our minds right back into crisis mode as we prepared for yet another year of treatments, tests, recovery, and fear. Her oncologist said that he’d get back to us on Friday with a plan of action, but we should prepare, at least, for another biopsy. That thought alone was disturbing, as Ema’s leg has been through so many traumas already that entering that site again seemed to go against both logic and nature.

So, we spent Friday with these thoughts in our heads and when five O’clock finally rolled around, we resigned to the notion that we simply would have to go through yet another weekend of worry. Then, at six P.M., her oncologist called. He told her that he spoke with the ortho oncologist and he explained that the mass that the MRI detected wasn’t a tumor, it was a void that he created during his last surgery (biopsy) and which he had filled with a type of surgical cement. Ema’s knees almost buckled as she heard this good news and a wave of relief swept over her. She told me the news and we hugged each other. It was such a profound sense of relief – possibly the biggest relief of this whole ordeal because so much was riding on the prognosis.

Needless to say, the rest of that evening, in fact – the whole weekend was very cheerful. I dare say, as I’ve been wrong before, but I think it might finally be time to take a deep breath. No more tests for about two months. Whew!

*** *** ***
Ema and I received a nice email from a fellow podcaster, Nanette from the “For Whatever Reason” podcast, and she turned us on to another Sarcoma blog, this one by a man named Dave who was recently diagnosed and is just beginning treatment. His story is so familiar, especially the agonizing periods of waiting between tests and results. Follow Dave's compelling and inspiration journey HERE.