Breathe In, Breathe Out

Moments of Grace

2011-09-26T06:01:00.000-07:00

I met a woman inmy doctor’s office this afternoon. I wasthere having my port accessed so I could go over and get my MRI. She was there because she had recently beendiagnosed with breast cancer. She wasasking the nurses questions about what to expect. The subject of ports came up and I told herabout mine. That led to many otherquestions and we all talked for quite awhile. There are so many questions at the beginning of the cancer journey andfar too few answers. The answers thatyou do get are often contradictory and vague because no two people experienceeverything in the same way. These arenot the types of answers that you want at that time. You want someone to tell you exactly what itwill all be like and most importantly, that everything will be just fine. You don’t want to hear someone else’s horrorstories but you would like to learn from other’s mistakes. You don’t need to be reminded that you needto look on the bright side (where is that side again?), from the optimistic pollyannaswho 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 filterthem. Keep the answers that work for youand let the others slip off. Feel freeto ask; some won’t want to talk aboutit, but for others it feels good to share experiences. It always makes me feel good when I can easesomeone else’s mind by letting them know how it went for me. At the very least, it reminds us that we arenot alone, even in the darkest hours.

After my port wasaccessed and the lady and I hugged goodbye, I went over for my MRI. Once I got there I was informed that theywere 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 doctorsoffice. She seemed so brave and strongstanding there facing down a den full of lions. I was proud to stand by her side for a moment, lending a shoulder tolean on. So I dug through my bookshelfand found my favorite book on cancer, “There’s No Place Like Hope” by VickieGirard. I wrote a little note to go withit, wrapped it with a ribbon and took it back to my doctors office. I asked the receptionist if she would give itto 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 ofgrace and I’m glad I followed my heart to it.

All Clear!

2011-03-13T20:25:00.000-07:00

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

2011-02-22T05:24:00.000-08:00

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.

2011-01-18T19:23:00.000-08:00

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

2010-10-23T06:03:00.000-07:00

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!

2010-08-03T20:10:00.000-07:00

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

2010-03-27T19:49:00.000-07:00

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.

2009-12-18T19:57:00.000-08:00

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. . .

2009-12-10T19:33:00.000-08:00

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

2009-09-17T04:48:00.000-07:00

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

2009-08-12T05:17:00.000-07:00

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!

2009-05-31T17:11:00.000-07:00

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

2009-05-21T05:06:00.000-07:00

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

2009-01-11T20:21:00.000-08:00

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

2008-12-12T19:43:00.000-08:00

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

2008-12-10T18:43:00.000-08:00

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

2008-10-22T05:26:00.000-07:00

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

2008-10-12T07:39:00.001-07:00

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

2008-09-27T14:46:00.000-07:00

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

2008-09-06T12:53:00.000-07:00

*** 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

2008-08-08T18:47:00.001-07:00

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

2008-08-02T04:56:00.000-07:00

*** 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

2008-07-23T20:25:00.000-07:00

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!

2008-07-22T05:37:00.000-07:00

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.

Keep on keepin' on

2008-07-14T05:38:00.001-07:00

Here's something we weren't expecting to have to keep in our bathroom during these months of predicted "rest." The cute little white basket so innocently adorned with wound dressings is a daily reminder that no, we haven't been able to take a deep breath as we had hoped.

The painful lump above Ema's knee is worrying us. So is the fact that her leg still isn't healing. I've been taking pictures of the wound every night before we redress it so I can examine them side-by-side, and it simply isn't getting better. That's the affect of radiation damage. Skin cells just don't like being bombarded with massive doses of gamma radiation. Just ask Bruce Banner.

So - the plan? Ema is scheduled for an MRI tomorrow (Tues) to find out what that test can tell us about the lump above her knee. We have an appt. with her ortho oncologist the next day for him to examine the wound (site of the last biopsy) and recommend a course of action which might be another skin graph. Hopefully he will also be able to view the MRI at that point, although a 24 hour turn-around is rare for such tests.

We remain guarded and hopeful, but it's depressing. Seems that the only thing we can do is dig deep for the strength to persevere. I remind myself that, at this very moment, Ema is in no immediate peril. We have things we need to deal with, and that's what we do as a team - deal with things, one after another. We keep on keepin' on. Someday soon, perhaps we can take a deep breath and once again rest with both eyes closed. . .just like the good old days.

So good to be alive

2008-07-06T06:37:00.000-07:00

Hi Folks - Been a crazy week. Ema had to go into the hospital again - this time for an infection in her leg that kept her there two nights. The wound (surgical site) from the biopsy a month ago hadn't healed properly and was beginning to get infected. While at the hospital she received I.V. antibiotics and a two hour surgery to close up the wound.

We got home on Thursday, just in time to pack and leave for a couple of nights in Ventura county at our favorite beach resort. Ema wasn't able to dig for clams along the breakers, but had a wonderful time nevertheless.

Top photo above is a view of the Mandalay Beach Resort. Bottom pic shows Sam (4) and Nick (11) at one of the thrift stores we hit in Oxnard yesterday. Sam scored a Harley Davidson motorcycle jacket and some black boots. Nick came back with two leather jackets - a black motorcycle one and a classic brown leather bomber jacket which he loves!

I asked Ema yesterday if she was having a nice vacation. She said "It's so good just to 'be' here, and yes, I'm having a wonderful time."

Cancer Benefit ~by Ema

2008-06-25T04:36:00.000-07:00

Last Saturday evening I went to a cancer benefit with my sister Linda. It was to raise funds for the Pacific Shores Oncology Foundation. Since they are my oncologists I was happy to go to the benefit and see some of my doctors and favorite people from the office.

We checked out the silent auction items and Linda bid on a lovely necklace. They ended the auction as we were still standing there so Linda knew that she was the winner of the necklace. She paid for the necklace and put it on immediately. After that we got some food and a drink, which we took over to a comfortable couch to enjoy.

While we were eating I was approached by a man who quietly asked if I had cancer. Well, since we were at a cancer benefit, my hair is only about 1/8th of an inch long and I had been walking with a noticeable limp I can see why he made his assumption! I said yes and he told us that his wife had recently been diagnosed with breast cancer. She was to have come to the benefit with him but couldn’t make it because she had recently started her chemo and wasn’t feeling well. This husband, father of three was obviously trying his best to reach out, find comfort. He looked so sweet, sad and dazed. Linda and I promptly scooched over and made room for him. We told him my story and found out more details of his wife’s illness. We talked about how hard it all is, how to help the children understand and not be afraid, even though we are terrified ourselves. He asked questions and we answered honestly but optimistically. We stressed to him that they will get through this, even though of course, we don’t know for sure. But none of us know for sure, do we? Sometimes all we can do is encourage, commiserate and be there for each other.

About then, the lady from the silent auction came up to Linda and said that there had been a mistake. There was another bidder after Linda and he was the winner of the auction. She showed us the sheet of paper with the bids on it and sure enough there was a man’s name after Linda. Linda explained that she was surely the final bidder because we were right there when the auction ended. It was a bit of a stalemate with the grumpy man saying that he was the final bidder. Linda didn’t want to cause a fuss so she took off the necklace and handed it to the auction lady. She asked Linda for her credit card again so that she could credit her account with the money for the necklace. Linda graciously told her to donate the money to the Foundation.

Linda was calm on the outside but I could see she was steamed that she had been sniped on her auction. We knew the truth of the matter but certainly didn’t want to duke it out at a lovely charity benefit! So we continued to talk with the kind man about his wife’s sickness. About 15 minutes later we were again interrupted by the auction lady. She had the grumpy man’s wife with her who said that she had been told that there was a question as to whom the winning bidder actually was and that they didn’t want the necklace after all. Linda thanked her and took the necklace back again and they left. Linda started to put it on but stopped and looked at me. We had a moment of sisterly telepathy and I nodded my head at her. Linda reached over and took the kind man’s hand and poured the necklace in and closed his hand over it saying, “Give this to your wife so she will have something pretty during these dark days.”

We all teared up and he protested that he couldn’t accept it. We told him that he must. It was ours and then it was not, and then it came back to Linda for a reason. Tears were in all of our eyes as we shared this special moment of giving and receiving, showing us what this benefit was all about. Later I told Linda how proud I was of her for knowing instantly what to do and then doing it just right. She told me that she has many necklaces but will always remember the one she let go to where it really belonged. Our hearts go out to the kind man and his wife. May she wear the necklace in good health for many years to come.
~Ema

My biopsy came back clean!!! ~Ema

2008-06-14T04:54:00.000-07:00

I’m so relieved it’s almost indescribable. I feel like I have slipped out from under the sword. I know the sword still hangs above me but it’s not as close as I feared it was.

We are now at the place we had hoped for since hearing the diagnosis.

REMISSION!!!

It has been such a difficult year and yet I feel like I got off easy. I’m so lucky because I’m still here. My heart breaks for those in the cancer world who fight as hard as I fought but with worse results. I know I may join their ranks at any time and that is incredibly frightening. Cancer will always be a part of my life. I will spend the rest of my life searching my body for it. The amazing thing to me is that it looks like I will have a good shot at “the rest of my life”. When I was diagnosed with this rare, aggressive cancer we truly didn’t know if I was at the beginning of the end. Was it a bump in the road or the end of the road?

Now it looks like we can start planning for the future again. Looking forward years down the road. I know it’s all tenuous. I know I could get hit by a bus…but at least that bus isn’t barreling down toward me right now. That bus has veered off for a while. It may come back at any time but with this clean biopsy I can relax a little.

Everyone says to live like there will be no tomorrow. All we have is right now. I’m sorry but it is exhausting living like that! Trying to appreciate every little bit of everything, wondering if each special event is the last one you’ll have; it’s emotionally exhausting. Of course you want to appreciate your life and the people you love, but running around trying to wring every last drop out of life wears you out. There is a happy medium where I live my life, take care of my business and love and enjoy as much as possible. That’s where I am and it is such a blessed lovely place. Time to take a breath…

~Ema

CT Scan is Clear - One down, one to go. . .

2008-06-11T05:08:00.001-07:00

Just got word yesterday that Ema's lung CT was all clear. Actually, the terminology used was "Stable from last scan," but that's so dry, so clinical - isn't it?

We should get the biopsy results today. It's a little disconcerting that it's taken over ten working days to get the results for this. I called Dr. A's office yesterday and they were surprised that the results hadn't come in yet. That bothers me because that's exactly what happened to our first biopsy as it "bounced" around the country until someone at Harvard was finally able to identify it. Hmmmm. . . I'll try to keep positive today going into the appointment this afternoon, and report back.

~Tom

Just waiting. . .

2008-06-09T05:17:00.000-07:00

We have two outstanding tests for which we should get the results early this week. (That sentence proves that grammatical correctness does not always equate to clarity:)

We should get the lung CT scan test results back today. An "all clear" on this would be. . .well, 'terrific' doesn't seem to be a strong enough word. The other result, the bone biopsy, should come to us by Wednesday.

With "all clear" for both, we should be positioned to take a deep breath as we head into the summer with a clear horizon.

As always, I'll keep y'all posted.

~Tom

Biopsy - A Success!

2008-05-30T05:17:00.000-07:00

Ema had her biopsy yesterday, and I spoke with her orthopedic oncologist right after the operation. He said he is 95% - 99% sure that the bone he extracted was just that - bone, not tumor. We will make an appointment for two weeks from now so we can get the lab results, although I suspect his office will call us sooner if the news is anything other than good.

In order to take the bone biopsy the surgeon had to "re-use" the flap (skin graph), entering from her previous surgery site. She has a pressure bandage on, and there will be some discomfort, but the surgery itself was minimally invasive.

Next week - another chest CT scan! The fun just never seems to stop around here :)

Stay tuned. . .

~Tom

Biopsy Rescheduled to Thursday May 29th

2008-05-28T05:40:00.000-07:00

That white area below the kneecap is the culprit. That's what's necessitated the biopsy tomorrow. The good news is that the area in question showed up after radiation treatment, and didn't grow at all between two MRIs - three months apart. That evidence, combined with what the latest PET scan revealed makes our oncologist fairly confident that this is some sort of bone scarring from surgery/radiation therapy and not an osteosarcoma or some other type of tumor.

The biopsy will determine for certain the nature of this anomaly. In the meantime, we hold on to what we can to help us feel as positive as possible about the outcome. Writing it down seems to help. Thanks for coming along for the ride. I'll keep y'all posted.

PET Scan is All Clear!

2008-05-23T17:55:00.000-07:00

Just a quick post here (running out the door to dinner) to let you all know that Ema's PET scan came back all clear! She found out yesterday and we are both so very relieved.

She is going in for her biopsy next Friday to determine what's going on with her tibia, but her oncologist is optimistic. He said that the MRI showed no change from last time, and this PET scan, although it showed some activity in that region, didn't alarm him at all. Yay!

Sick Today. . .

2008-05-19T10:49:00.000-07:00

Ema is sick today. She woke up with a fever and chills this morning, so I'm staying home from work today and keeping an eye on her. Sam doesn't go to school on Mondays, so I'm watching him as well.

It's interesting just how little a four-year-old understands about 'keeping quiet' when mom is trying to sleep. . .oh well.

I just got off the phone with Ema's oncology nurse who is phoning in an antibiotic prescription to the pharmacy. I'll head over there in an hour and pick it up. The nurse said to call back tomorrow morning if Ema still has a fever so we can bring her into the office.

I'll keep y'all posted on this.

PET Scan - Not Fun!

2008-05-17T07:20:00.000-07:00

Ema had a PET scan on Thursday that took four and a half hours. The lab technician tried to hook up the I.V. for the contrast fluid several times, each one without any luck. Ema's veins have been so weakened by her previous chemotherapy 15 years ago, that she is considered a 'very hard stick' in phlebotomist's terms.

So, after an hour or so of being a human pin cushion, they decided to go ahead and use her medi-port. They wanted to avoid using the medi-port because those can sometimes give false-positive readings.

We should get the results back by the middle of next week, but we won't freak out if there are areas of concern. The false-positive possibility would then make us have to get yet another PET scan to test against. Fun stuff.

But, that being said, our spirits are high, and we are so looking forward to our oldest boy's 11th birthday party today at Ema's sister's house. Linda was so kind to open her doors to a dozen screaming tweens - thanks Linda!

~Tom

Long Term Plans

2008-05-14T05:13:00.001-07:00

Ema and I have been talking about taking an Alaska cruise for years. It's interesting how this disease, which can be so destructive in so many ways, can also act as the catalyst for action when it comes to making our dreams come true.

Within the next month we'll be booking this cruise for summer 2009. Unlike any previous vacation planning, we are reading the cancellation policy very carefully. We are settling into a routine in which, at least for the next few years, we will be at the mercy of the results of quarterly CT Scans. This "inconvenience" is something we can live with, and just one way in which this disease has changed our lives.

It feels good though to make such long term plans. It helps us to feel normal again. Most people avoid using the word 'normal' when describing their lives as it usually equates to 'boring.' Right now - we yearn for normal, boring, and mundane. When you've been living in 'crisis mode' for nine months, 'normal 'sounds so darn good :)

The Oncologist's Opinion

2008-05-11T20:19:00.000-07:00

This past Friday Ema was finally able to speak with her oncologist about her MRI. His words were encouraging. He said he examined the MRI and really thinks the bone anomaly is just scarring from the radiation treatment.

That is very good news, but we are still going forward with the biopsy on May 29th.

PET scan on Wednesday of this week should reveal more as well. Actually, God-willing, the PET should reveal NOTHING. Will keep you all posted.

A Trip to the Emergency Room - But Ema is Fine

2008-05-09T05:48:00.000-07:00

For the past four days, Ema has had quite a bit of pain in her affected leg right above and to the inside of the kneecap. We both attributed it to walking around the OC swapmeet for a couple of hours on Sunday which represented the most walking she had done at one time in a while. But by Thursday evening when the pain wasn't going away, we stopped attributing it to sore muscles.

This painful area also was slightly discolored and was warm to the touch. I, being a knee-jerk hypochondriac with just enough medical knowledge to cause problems, assumed a femoral aneurysm or DVT (deep vein thrombosis). Those two ideas were enough for Ema to agree to call her doctor at 8:30 last night. The doctor-on-call suggested we go to our local hospital and have a sonogram (ultrasound) run on that leg to rule out any blood clots or other nasties.

We were in and out in just about two hours which ain't bad for an emergency room in a city of any size. No blood vessel trauma or anything else showed up on the sonogram. The doctor gave her a prescription for antibiotics because he suspects, with her compromised immune system, she might develop cellulitis, which is an infection in connective tissues under the skin.

Home at 11:00 on a school (work) night means I'm tired this morning. Buy hey - this isn't about me - right?!? Ema will rest today, keep the leg elevated and report any worsening of the affected area to her doctor, if needed.

Now, I'm off to work.

Ema's Update - May 6, 2008

2008-05-06T19:02:00.000-07:00

Good news! After a long time waiting, many phone calls to the doctor's office being the squeaky wheel, we finally got word that there's no change from the MRI last week to the previous one a couple of months ago. This could very well mean that the anomaly in my leg isn't a tumor, but rather bone damage as is suspected. I'll have another scan (PET) next week and a biopsy at the end of the month, but we'll worry about those things as they come. To celebrate the news today we took the kids to Ruby's diner for milkshakes and burgers. It's important to celebrate every triumph we get.

~Ema

From Ema's personal diary - Looking back

2008-05-01T18:58:00.001-07:00

October 7th, 2007

I felt good about attaining some little goals this weekend.

I put up the Halloween decorations and they look nice.
I took a shower.
Tom took the kids and I shopping at Target. It was so great to be out in the world and buying things! Yay for retail therapy! I was almost in tears buying paper plates!

This weekend, the shopping trip - they were a little slice of normal and it was wonderful!!!

. . .I LOVE normal.

MRI is Done - Now Waiting for Results

2008-05-01T05:21:00.000-07:00

Ema had her leg MRI yesterday, but the radiologist told her that it would be Friday, at the earliest, that results would be available for her doctor. She is seeing her oncologist today and getting blood tests. Hopefully her hematocrit (portion of her blood volume occupied by red blood cells) level is up from last week. We suspect it is as she's been eating iron-rich foods and feeling a little better each day.

There are still scary times like last night when she had a wave of sickness that she said felt just like the flu. Several hours of sleep proved helpful though as she was feeling better by 3:30 this morning. By the way, does anyone ever feel okay at 3:30 in the morning? I know I don't. Perhaps I should have waited until a little later to ask her. . .oh well.

I'll give an update later as to what her doctor said today.

~ Tom

The Kanzius Machine - A Cure?

2008-04-27T15:15:00.000-07:00

Ema and I discovered this last week and have watched that 60 Minutes video segment a couple of times now. Seems almost too good to be true.

Our feeling is that we hope public awareness will spur a flood of research money into this effort and put the human trials on a quicker track.

Your thoughts?

Tom

Each Day is a Tiny Bit Better

2008-04-26T11:25:00.000-07:00

I am done with chemo! YAY!!! Thank God!

I had my last chemo on April 17th, and have been feeling awful ever since. But the great thing is that I know that now when I build myself back up, I get to keep it! So wonderful! I can't wait to feel better. My blood counts have been very low. We were considering a blood transfusion a few days ago, but the doctor decided I could build back up on my own. Each day is a tiny bit better.

Now I just need to get another MRI, PET scan and bone biopsy to make sure the mass in my tibia is nothing bad. I'm trying not to think of all that right now. It's a constant challenge not to be ruled by fear. I have to talk myself down all the time. I tell myself that I wouldn't walk down a scary road especially when I'm already weak. So why let my brain go to a scary place now? I'm all set up to have my tests and if they come back bad then we'll deal with it then. I am taking care of my business but I certainly don't need to fret and worry and borrow trouble. "Sufficient unto the day is the evil thereof." Deal with today and trust that you can do the same tomorrow.

Trust, control and ultimately faith - huge issues!

~Ema

Forgiveness in Trying Times

2008-04-22T18:54:00.000-07:00

I yelled at my son the other day over a towel.

He had used a new towel instead of re-using his other towel, (that was still perfectly clean), after I had told him which towel to use.

In my defense, I was utterly exhausted and fed up with the endless laundry our house generates daily. However, that was not a good enough reason to yell at my child like I did. I felt awful and after I calmed down I came in to where he was sitting. I sat next to him and told him I was sorry and asked for his forgiveness.

My sweet boy forgave me and said he understood. What am I teaching my children as I go through this difficult time? I think I am teaching them that we do the best we can but sometimes we still break. But then we put ourselves back together and try to right the wrong we have caused. That there is no shame in admitting an error and asking for forgiveness.

There is great honor in granting that forgiveness as well. I'm not perfect and therefore, my children know that I don't expect perfection from them either.

Later that evening I let him stay up ½ hour later than normal. We read books side by side on my bed, enjoying our companionable silence. He thinks that getting to stay up late was a reward for putting up with his crazy mommy.

I know that the reward was actually for me, getting to spend some happy, quiet time with my firstborn son. It was my reward for trying my best, however far from perfection that may be.

Mystery Reader

2008-04-19T09:30:00.000-07:00

This past Wednesday, I had the opportunity to be the "Mystery Reader" at my daughter, Juliana's kindergarten class. The Mystery Reader shows up to the surprise of the children and reads a book to them.

I was conflicted about my book choice. I had chosen to read "Sammy's Mommy has Cancer". It is a book about cancer that is geared toward small children, to help them understand the situation in a clear but honest manner. After I finished reading the book I surprised the kids again by whipping off my hat to show off my bald head. They loved it! Some of the kids came up to rub my head and make a wish, while others passed my hat around to try it on and laugh at how it came down so far on their little heads. One child came up to me and said quietly that his Grandma had died of cancer. I took his hand and said that yes, sometimes that happens and it is very sad. But very often people recover just fine. I told him I was sorry about his Grandma. He seemed okay but I wonder if I awoke an old wound in him.

I believe that it is so important to be carefully honest with our children about what we are going through. They pick up on the tension in the house and know that things are not as they were. It is our responsibility to explain, in ways they can accept and understand. We give them the best possible outlook on the situation, telling ourselves that if things go badly we will explain that as we go too. I think that fear of the unknown is the worst fear and telling a child that things are just fine when they clearly are not is not helpful.

After I read the book to the kids I handed out little treats: animal crackers and little toys. Then, to lighten things up I read another book "DogZilla" which was a big hit.

Juliana was thrilled to have me in her classroom and it was a special experience for me too. Sam had come with me and Nick had slipped into the classroom during his lunch break. So I had my three little ones with me. I shared a difficult experience with gentle candor and humor and then we moved on to the silly stuff. All in all, a perfect afternoon.

~Ema

The Last Lecture

2008-04-16T20:43:00.000-07:00

This is not a book review, it's a discovery.

I've been a complete mess for the past three days, and I think I've discovered why. I just finished listening to 'The Last Lecture,' and this thing tore me up!

Of course whatever is going on with Ema's tibia is on the front of my mind at all times these days, so maybe it wasn't the best time for me to "read" or listen to this audio book. I think my timing was a bit off. Perhaps after the biopsy in a few weeks, but it's done - no going back now - it's in my head.

That being said, this book has made me realize some important things that I'm really glad I know right now, at the expense of bringing our situation even closer to the surface. I don't regret listening to it, but it's a book that I'll have to 'recover' from and take its messages into the future while leaving the pain behind.

Randy Pausch did a great job of summarizing his life and his dreams in this book, and he did so without being sticky-sweet about it. He's a realist, and his honesty was evident throughout. It provided him with an immediate integrity which helped me better absorb his words rather than question them as I do from so many self-help authors.

Plain and simple, it just hit so close to home that I began playing too many "what if" scenarios in my head. It's hard not to. I imagine I'd do the same thing even if Ema didn't have cancer. With the disease though, it made it all very real.

Thanks Randy for writing this book and giving your lecture. Thanks for providing us with words and simple wisdom that will live, not only in your children's minds and hearts for years to come, but in ours as well.

Thank you for the offer

2008-04-14T20:15:00.000-07:00

This weekend I found myself in a conversation with some people who live up the block from us. One of them, the wife, said she saw Ema get out of the van recently, but didn’t recognize her from her bald head. “How’s everything going?” She said. To be honest, I like being asked this question. For the same reason I enjoy writing about our journey in this blog, I love getting the opportunity to tell our story. It’s therapy for me. It allows me to run through the ordeal in my head, re-examine some of the circumstances, the emotions, and the sequence of events. It keeps the experience fresh in my mind, which for me, is exactly the way I want it to be.

You’re right, I’m not in denial. In fact, if denial WAS a river in Egypt, I’d be on a beach in Australia, or wherever the polar opposite spot of the globe is. I don’t ever want to experience the fear we did at the beginning, but I also don’t ever want to forget it. It’s a strange dichotomy, and one which I don’t expect anyone to understand.

Most of the time my stark realism works well for me in telling Ema’s story, other times, it makes people uncomfortable. During this conversation with the neighbors, I could tell I had the couple’s attention. I’ve told the story enough times to have crafted it into quite an engaging tale. The problem isn’t so much with my delivery, it’s the content. I tend to add in a little too much detail about the leg surgery, the recovery, the medi-port. I don’t do that for shock value, but because I, myself find it fascinating. I suppose it’s the combination of my fascination and obvious grief woven into an inherently uncomfortable subject that makes the story sometimes hard to listen to. Oh well, this is drama folks – hard-edged, real-life, in-your-face reality. I haven’t censored my story yet, and I’m not about to start. I have to be 100% honest with myself, and this also means being just as honest with everyone to whom I share this experience.

When I was done, I looked at both of them and they were quiet. “Did I go overboard? Did I come across too exuberant, too intense? Do they realize I’m done – should I say ‘The End’?” These and a dozen other doubts ran through my mind as I looked at their faces during these few seconds of silence. Then the man looked down at the ground briefly and back up to his wife’s face. She kept looking at me, and it was then I saw her eyes were starting to shimmer. “Oh God, I’d gone too far, I didn’t mean to make anyone cry here!” I smiled, and said – “Hey, but we’ve got today – right?” Which is the circumstantial equivalent of “Hey, how ‘bout them Dodgers?” She blinked – no tears, good. “If there’s anything at all we can do for you guys, please, please let us know.” Her husband nodded in approval, and I smiled. “Thank you,” I said. “I know when people make offers like this that they mean it, and this means so much to Ema and I.”

We’ve been fortunate enough to give that response dozens of times over the past six months. Usually it’s followed up by “We don’t need anything right now that I can think of, but we’ll be sure to let you know.” Fact is, we have every intention of taking advantage of these offers if the time ever comes when we need to. We pray every day that these times don’t come. Real need equates to real trouble in our minds. If the bad times ever do come, the times when we truly need people’s help, then I’ll be speed dialing everyone who has ever offered. Until then, we prefer to do most things on our own. If nothing else, it’s a way of saving all these offers in a reserve for days which we hope we’ll never see.

An Audio Update for a Change

2008-04-08T06:32:00.000-07:00

Here's an audio Ema update I recorded last week for Utterz.

Click HERE to listen.

Thanks,

Tom

Hair Today, Gone Tomorrow

2008-03-05T07:30:00.000-08:00

Well - It's done and we LOVE it! Ema knew she didn't want to watch her hair fall out, day-by-day and feel self-conscious about it. Plus, she said looking in the mirror was becoming depressing because she looked sicker than she really is! She called Linda and between the three of us, we rid her of all that pesky hair. The kids were great with it - even Juliana said "Mommy, you look beautiful!" Chemotherapy is hard. She has her good days and bad. There's one drug, in particular, that Ema gets to help her boost her immune system that makes her feel flu-ish - ironic, ehe? Besides that, and the general fatigue from the treatments, she's doing great, and her attitude is as terrific as ever. More photos HERE. Back soon - Tom

A Little Kissing Up Doesn't Hurt

2008-02-09T07:29:00.000-08:00

Ema's first day of chemotherapy was this past Thursday. Note the chocolates next to her. She brought them as bribes to the nurses so they would be kind with their needles. Hey - attitude is everything, but a little kissing up doesn't hurt either!

Under her right shoulder blade there's a miraculous little, self-sealing silicone device - a medi-port (or porta-cath) that allows up to 1,000 needle punctures without the need to prod around for a good vein to use each time. We are so thankful for this type of technology. She'll be doing chemo through late June once per week - two weeks on, one week off.

Feel free to leave words of encouragement as comments on this blog, and I'll be sure she gets them.

Thanks!

Tom

Chemotherapy

2008-01-18T06:28:00.000-08:00

Hi folks - It's been over a month since the last Ema update, and something happened earlier this week that we wanted to share.

Ema visited her oncologist (one of her oncologists, actually - she has a team of them), and he told her he'd like for her to start chemotherapy next week.

This was unexpected since we were told back in November that we could wait to use chemo in the event of a relapse.

Well, the UCLA oncology board revisited her case and decided that, since the tumor was 5cm - the exact cutoff size for recommending chemo, and it was a very aggressive, rare type of tumor, that chemo would be a good thing at this point.

Ema's attitude is amazing. She's not looking forward to losing her hair, but beyond that, she's taking all of this really well.

In a sense, we both feel a little better about her situation because, until this news, it was up to us to make the decision regarding chemo at this time. She was borderline, and the doctors left the decision up to us. It's comforting, in a way, to have the doctors go ahead and recommend what they believe is best at this point. Chemo is pretty nasty stuff, but so is soft-tissue sarcomas. Better safe than sorry.

Ema had chemo before - some fifteen years ago when she had Hodgkin's disease. She lost her hair then, which was stick straight, and it grew back wavy. We're joking now that it will probably grow back in tight curls - ala Freida - the little curly-headed girl in Charlie Brown.

She starts chemo next week, and has to sit in the chair for about 5 hours once per week for her treatments which will last four months - maybe five.

I'm firing up this journal again to keep you folks up to date, and we'll give more details in the next podcast.

Thanks!

Tom

Heading into the Holidays

2007-12-04T07:24:00.000-08:00

It's been a few weeks since I posted an Ema update, so here's what's happening. Ema is undergoing her 4th week of radiation therapy on the tumor site (leg). She is doing very well with only minor fatigue and very little blistering.

Her attitude is amazing. I told her yesterday that I'm stunned at how positive she is being through all of this.

We can thank her radiologist and his team for their kindness and expertise during each one of Ema's 5-day-per-week visits to their clinic.

She will be finished with her treatments before Christmas, so we'll have even more reason to celebrate!

Ema and I are planning our Christmas Podcast episode, which will also be our 50th episode - stay tuned for that within the next week or so.

All the best to you, our loyal listeners.

Cheers,

Tom

Good News and Radiation Time

2007-11-02T07:23:00.000-07:00

Great News! We received the PET/CT results yesterday and they show no signs of abnormal cell activity!

Ema started radiation treatment yesterday. That's going to be five days per week for 6 1/2 weeks. We are prepared for anything, but so glad that all we have to do for now is radiate the leg, start physical therapy and keep our eyes focused on the future.

We just made reservations for next summer's vacation at the Santa Barbara Family Vacation Center. Same as this past year. So, yes, we are literally 'banking' on Ema being well.

Thanks for all your prayers and kind thoughts. The next few entries will contain excerpts from Ema's personal cancer journal.

Today's word of the day: Persevere

- Tom

Waiting for Tests

2007-11-01T06:22:00.000-07:00

We’re waiting for the results of Ema’s PET/CT scan done Monday. It’s hard to wrap my mind around the gravity of these tests. In the time frame of one phone call from the radiologist, our future will be disclosed. If we hear “All clear” – then we take a deep breath and continue as planned with the radiation treatments this week, and schedule another full-body PET/CT scan for a few months from now. If we hear “We see some areas that concern us” – then our hearts sink into our guts and we succumb to the inevitable shock while frantically phoning our team of oncologists.

Yes, these are very stressful times, but somehow we persevere. As much as I hate having our future hinged on the results of a test, I’m glad we opted to get this test done. It wasn’t presented as an option by any of Ema’s oncologists. She heard about it from the lab tech who performed her last CT scan. Turns out the oncologists all agreed the test was a good idea, just not something they usually prescribe. So, thank you lab tech guy. As agonizing as it is to wait for the results, we are grateful to you for recommending it.

Something Good Could Happen

2007-10-26T06:19:00.000-07:00

“Something Good Could Happen!” Ema wrote that in large, block letters on a sheet of note paper then taped it next to the computer monitor in our bedroom. You can see it from any point in the room, and I find myself glancing at it often – especially in the quiet of the evening after the kids have gone to bed. I like the simplicity of it, the humbleness, and the fact that it so adequately summarizes our struggle to stay optimistic in the face of this disease. Ema is scheduled to go in on Monday to get a PET/CT scan. This will show any hotbeds of cellular activity in her body. Generally speaking, you don't want any 'hotbeds' of cell clusters growing wildly in your body. That's a sure sign of cellular malfunction. In Ema's case, this will indicate cancer cells forming tumors. So, here we go again with more tests, more fingers crossing, more praying, more waiting.

I’m thinking of adding another note to adorn the left side of the monitor. It will read, “We Have Today.” That’s something I’ve been giving a lot of thought to lately. In a world where anything can happen at any time – fire storms, accidents, cancer – that message seems to be both universal and personal at the same time. There’s that theme again – the more personal you become, the more universal you become as well. See – like it or not, we’re all in this together. Thanks for coming along for the ride.

- Tom

The Dinner Date

2007-10-21T06:18:00.000-07:00

Thought I'd add a happy photo to the blog for once. I took this one last weekend at the annual St. Hedwig Autumn Festival at the high school up the street.

10/21/07 - Ema and I went out on a dinner date tonight for the first time since before the news of her cancer. The hostess led us through the crowded restaurant at a pace much too fast for Ema who had forgotten her cane at home. I walked behind her, told her to take her time and ignore the hostess's rapid gait. She did, and as she walked, I thought about how proud I was of her for being so brave. In her mind, of course, she's scared to death, but to me she's a fighter, a survivor. The hostess stopped at a corner and stood with our menus at her side in a posture that told us that she was sorry for getting so far ahead. This abrupt world has little patience for the wounded, slow-footed soldier. Cancer certainly waits for no one. But tonight we held our ground. We went on a date, toasted to survival, and for the first time since this all began, stared the enemy back into the shadows. This was our time, and at least for tonight, this disease would just have to wait.

The Weight of Reality

2007-10-16T06:15:00.000-07:00

Ema and I are feeling the weight of the reality that is 'living with cancer.' After a terrifying first month we came into a period of relative relief as test results showed no signs of metastasis. Then the meeting with the sarcoma specialist at UCLA confirmed the gravity of our situation. No bad news, per say, just nothing real positive to hang our hopes on. Further meetings of the sarcoma team brought a confirmation on the tumor type - a high grade, undifferentiated, malignant pleomorphic sarcoma. I plugged that tongue twister into Wikipedia, and it came back with an error message stating that three server farms exploded while trying to find information on it. Don't bother looking it up on Google either. It's so rare that you'll be lucky to find a few scattered, obscure clinical trials dating back to sometime before the death of disco.

Ema is still in pain. The surgery site is healing great, but her calf muscle is extremely sore. I can't imagine why. Slicing 1/3rd of my calf muscle away from the connecting tissue then folding it 180 degrees back upon itself and stuffing it into a crater below my knee the size of a baseball sounds like a walk in the park for me. But remember folks, I'm the one who underwent voluntary throat surgery last March just to get good material for the podcast. Ema is behind me on the bed, reading. She just said "hey - add this into the blog - Pain is your body's way of letting you know you're still alive." "Okay honey - I'll add it. Now let's get some rest; you're gonna need it next week when the radiation treatments start."

G'night folks,

Tom

UCLA Sarcoma Team

2007-10-06T06:13:00.000-07:00

Ema update 10/06/07 - Ema and I met with the sarcoma specialist at UCLA yesterday and he confirmed the seriousness of the condition, but also told us that it's encouraging that her lung scans are clear and the biopsy from the tumor margins is also clear. We are at a good place to begin treatment. Looks like radiation therapy will begin in about one week. That involves treatments seven days per week for five weeks. After that we'll have to decide whether we want to pursue chemotherapy.

It was difficult hearing a renowned specialist confirm our fears about recurrence, potential amputation, metastasis, etc. We have to keep focused on the good news though and always keep our eyes on the horizon. Ema showed the doctor a photo of our three children and then looked him in the eyes, "These are the reasons I have to be here." she said. He nodded. I think he understands.

By the way, if you care to see photos of the surgery site on Ema's leg, you can click on the links below.

WARNING! These are not for the squeamish - keep kids under 12, elderly people with pacemakers, and pets with bladder control problems out of the room while viewing!

These were taken one week ago. The staples have since been removed.

Leg photo #1

Leg photo # 2

Now That's More Like It!

2007-09-29T06:11:00.000-07:00

Ema update 9/29/07. Okay - Ema has been home for two weeks now, and the pressure bandage was taken off this past Wednesday. Plastic surgeon and ortho oncologist both agree the surgery site is healing nicely. I'd like to post a photo of the surgery site, but I haven't broached that idea with Ema yet. Plus, I believe the Internet has enough shocking photos on it already :) Hey - she's a cancer patient, not a sideshow! Alright, I'll see what I can do. We have an appointment with the head of the sarcoma unit at UCLA in two weeks. He wants to discuss treatment options. Other than that, it's a slow healing process with day-to-day slow changes. As I right this, in fact, she's creeping up behind me with her walker! "Oh, hi honey! Uhh. . aren't you supposed to be in bed?!?" She just gave me a resolute "Hmmmm. . ." a-la Marge Simpson, and toddled off down the hall. She can get around now! More than just from the bed to the can! Sorry honey - I mean the throne! She'll hate that I mentioned that, but getting her riled up is part of her therapy - it's gets the blood flowing to the extremities. That's all to report for now. I've installed intercoms throughout the house and she's using one to hail me at this very moment! I'm so busted. See ya - keep the emails, cards and letters comin' We appreciate all the kind words ! - Tom

Pressure Bandage

2007-09-22T06:07:00.000-07:00

Update - Saturday September 22, 2007. Ema is still bed-ridden - doctor's orders, and a physical necessity considering the size and weight of the pressure bandage on her leg. The photo above was taken this past Wednesday at her orthopedic oncologists office. We were hoping to get the bandage off then, and disappointed to hear he wanted it left on for another full week. Still, Ema's spirits are good and we have, just within the past couple of days, heard that the tissue removed from her leg is clear of any abnormal (cancer) cells. That is very good news, and will help shape the radiation and chemotherapy treatments which should begin in about two weeks. This past month has been the worst month of our lives, but oddly enough, there are some good things that have come from it. We have both experienced a lifetime of emotions in one month, and have learned much about ourselves, each other, and our lives in general. One of the things that shouldn't have surprised me but did anyway was just how broad our circle of friends is. When Ema agreed to share her recovery on this blog I was very proud of her. Isn't it interesting that the more personal you are willing to be, and the more honest your are willing to be about sharing the details of your life, the more universal you are? This is one of the many realizations we've had during this past month. I know that personally, I've discovered that I can function in the face of terror - get through the day, continue to take care of the kids. That's a strength that I never knew I had. I also learned just how much I truly love Ema. There's nothing quite like facing death that makes one take critical inventory of what's important in their lives. We'll be back for another podcast as soon as Ema can climb the stairs to the loft. Or, I may try to record one from downstairs - we'll see. Stay tuned for more updates - and THANKS for taking the time to get to know us - through thick and thin.

Home From the Hospital

2007-09-19T06:06:00.000-07:00

Ema came home from the hospital this past Friday evening. The pressure bandage on her leg is 24" in diameter, quite heavy, and keeps the leg very stiff. Hopefully, with our visit to her orthopedic oncologist today, we'll get that bandage replaced with something more manageable. She'll need something that allows the knee to bend so that she can start physical therapy later this week.

We are waiting on the pathology report of the extracted tissue surrounding the tumor site. This will indicate the amount of cancer infiltration into the margins and allow the radiologist to target specific areas for radiation treatment. It will also give us an idea of how far the cancer might have spread into the surrounding tissue. Hopefully, not much.

This report is important important to the radiologist and oncologist because it will help them map out exactly where to concentrate the radiation. As you know, the radiation will destroy the healthy as well as any cancerous cells. The idea is to give enough radiation to kill any rogue cancer cells, but not so much as to cripple her by destroying too much of the healthy tissue that's left or damaging the bone. At this point it looks like chemotherapy will follow radiation treatment.

Ema's spirits are good, and we are both ready to continue this battle with the help of family, friends, and our team of doctors. The kids are glad that mom is home, and don't seem too disturbed by the sight of the gigantic band-aid around mom's leg, only the fact that we didn't opt for the Spongebob Squarepants variety.

I'll post another update as we get the pathology report.

Thanks again for all of your well-wishes and help.

*** *** ***

Day 17 Monday 9/10/07: 9:30 AM – Can you say pins and needles? Surgery is today – 3:30. Resection, reconstruction and skin graph. Three things that just shouldn’t have to be done to a body. Thank God we have the technology to do it though! We are also waiting for the ‘all clear’ from Dr. U on the two latest CT scans – pelvis and thorax/abdomen. So, yes, I’m requiring CPR every time my phone rings this morning.

Day 18 Tuesday 9/11/07: 8:00 AM – Ema’s surgery went as planned and she is resting comfortably in the hospital. We are on step four of making Ema cancer-free: Find, Remove, Heal, Annihilate, Recover. Seems like a solid plan.

On the home front, I’m adjusting well to the role-reversal. Was able to get the kids up and out of bed, pre-dawn. “Is it night or day, daddy?” “It’s both, now get your shoes on.” I have a renewed appreciation for what Ema does every single day. Oh shoot! I just realized I forgot to have them brush their teeth, and today is picture day for Juliana and Nick. . .oh well. At least I didn’t leave the iron on or the shower running as I left the house. I think. I’ll call Dr. U’s office this morning to hear results from the other two CT scans.

Teeth-grating Anxiety

2007-09-17T06:04:00.000-07:00

Day 12 Wednesday 9/5/07: 8:00AM - Teeth-grating Anxiety. I just read more about sarcomas. Seems they are particularly wily critters. Hard to detect, invasive, travel anywhere the blood goes, usually hit the lungs first when they spread, but really could go anywhere. Ema was able to make an appointment for tomorrow afternoon to get three more CT scans with contrast done so we can see how clear her pelvis, thorax, and lungs are. See how positive I’m being? I think the fear of the unknown is the worst kind of fear there is. Hopefully I won’t be proven wrong as we continue on our journey of healing.

Day 13 Thursday 9/6/07: 8:00AM – "Be kind, for everyone you meet is fighting a great battle." - Philo

We had an encouraging conversation with Dr. B yesterday. He’s an upbeat guy with an infectious positive attitude. He didn’t think getting the two additional CT scans was necessary, stating that her lungs were clear and that’s the most likely place that tumors would form from an extremity sarcoma. In an effort to keep our conversation positive and congenial, I didn’t remind him that he was also the Dr. who, three months ago, said the lump on Ema’s knee was nothing to worry about. In all fairness, that wasn’t his fault. No one in their right mind would bet on a 300,000 to 1 race horse either.

Day 14 Friday 9/7/07: 6:45 AM – Ema had pelvic and abdominal CT scans yesterday. She’ll call Dr. U today to see if they have any lab results. With a clear report we’re on schedule to operate on Monday. This weekend should be much better than last. We have more information, including Dr. B’s confirmation that Ema’s lungs are clear, and are closer to ‘scooping out’ any nasty cells remaining in her leg. Yay!

The Joy Void

2007-09-15T09:02:00.000-07:00

Ema Update: Ema came home from the hospital yesterday. I think I'll have to take off at least part of next week to help her. At any rate, Linda and her daughters have been a tremendous help. Ema sleeps while the rest of the house is kept in order and we work as silently as possible around her - letting her heal.
*** *** ***

Day 7 Friday 8/31/07: 8:00 AM – Ema and I have an appointment with the plastic surgeon this afternoon to go over the leg surgery. In the meantime, we wait – again.

Day 8 Saturday 9/1/07: 10:55 AM – I’m sitting in the waiting room while Ema gets two MRIs of her leg – one with, and one without contrast. What if this tumor was just a rogue tumor – acting alone without any friends, and with no intention of creating any friends? Is it possible that Ema could, at this very moment, be cancer free? This is a good question to ask Dr. U, Ema’s main oncologist. Actually, it sounds like a good question to ask if we want to set ourselves up for disappointment. Doctors are notoriously conservative with their answers to questions like this. Still, some positive news would be so sweet to our ears right now.

Day 11 Tuesday 9/4/07: 7:05 AM – The Weight of Our Fears – People with post-traumatic stress syndrome often face ‘hot memories’ – bad memories and traumatic fears that own them. I’m trying not to let my fears own me. I fight back, force my fears way down deep as far as they will go. Seems they always find a way to surface. I wonder if this is how our lives will be from now on. I’m certain that our lives will never be quite the same again. We will be on alert at all times, ready to do battle with whatever may appear. We will worry intensely after each CT scan which will have to be performed every three months for the next three years. I’ll be extra-sensitive to Ema’s coughing – a sign of lung cancer. But I’m not afraid of all of this, nor do I feel burdened by it. It’s just something we have to do from now on – our lives really have changed, but maybe it’s not for the worse.

The three day weekend was tough. Cancer has taken the ‘joy’ out of life, and replaced it with fatigue. I hate to give it that much power, but until we get on the road to healing, this is what we face. Three days of inactivity – well, two and a half since the MRI on Saturday, is frustrating. Ema is going to call Dr. U. this morning and try to get some questions answered. Big questions for which we trust Dr. U will give us his usual expert answers: Will Ema live through this? (Yeah, that’s a big one.) How does the relative rarity of the tumor affect treatment, recurrence, survival? What other areas of her body should be scanned for tumors besides her lungs? Answers please, the sooner the better.

8:00 AM – I found an interesting survival calculator on the Sloan-Kettering cancer Web site: http://www.mskcc.org/mskcc/html/6181.cfm Wonder how accurate it is? I read 90% here, and 60% on another site. No one knows, and for people like us who are desperately seeking answers, the numbers just add to the frustration.

Knowledge Doesn't Always Equate to Power

2007-09-14T06:59:00.000-07:00

Day 4 Tuesday 8/28/07: 8:30 AM - Ema, her sister, Linda and I met with Dr. B., the orthopedic oncologist, yesterday late afternoon. He spoke with us for nearly a half hour, explained the bizarre nature of the tumor he removed, the plan for treatment and further detection of rogue tumors.

2:40 PM – I take back anything I may have written earlier about how knowledge is power, and helps relieve stress. Ema just called and told me she just talked to Dr. U., her main oncologist who was “very concerned” and wants to treat this aggressively and immediately. He said he’s concerned that it may have already spread because the tumor was in her for nearly a year and had grown to ‘high grade’ status. Hearing this has made me even more anxious about getting this CT scan ASAP. Hopefully we’ll get it scheduled for later this week.

Day 5 Wednesday 8/29/07: 7:00 AM – I feel like my life force is draining from me. I have no spark, little personality. I feel numb but in tremendous pain at the same time.

Yesterday Ema was able to make an appointment to get a CT Scan for tomorrow (Thursday) at 3:30. Today we’re going to work on arranging to get results before the long, Labor Day weekend ahead.

Day 6 Thursday 8/30/07: 8:30 AM – We’re playing the waiting game. Ema had her CT scan yesterday afternoon and we should hear today or tomorrow whether her lungs are clear. I’ve learned that the liver and brain are also ‘popular’ destinations for metastasis. What other fun facts await us?

I’m dwelling on loss this morning – not a good thing. The more I read about sarcomas, the more I understand how tenacious the disease is. Long term survival rates are not promising. Can Ema be here for another three years, another five? Will she be one of the lucky ones to be cancer-free for the long run? There’s a part of me that wishes I had a more profound connection to my higher power. Another part of me that recognizes I’m too upset to make friends with an all-powerful being at the moment. Now may not be the best time to find God. Some may argue it’s the best time. I don’t have the energy to decide so I do a little psychotic shuffle between praying and pleading with God and cursing the universe from the very depths of my soul. If there is a God, I hope He understands.

1:35 PM – I’ve been searching for the right word to describe my mood today, and it just came to me – heartbroken. I’m the closest I’ve been to breaking down and bawling in my hands. Not a great thing to do while at work, and the pressure to keep it inside does nothing but add to my anxiety. Still waiting for CT results.

2:35 PM –Ema just got back to her work after her appointment with her radiologist, and she called me to tell me the preliminary CT results showed no signs of cancer. Thank God! Then the question – what does ‘preliminary’ mean in this case? Okay, shut up – allow this relief to sink in, settle, take a deep breath.

And So it Begins. . .

2007-09-12T06:54:00.000-07:00

Ema update: Ema's surgery was Monday and it went as planned. The orthopedic oncologist and plastic surgeon worked to perform a radical resection of the tumor site. There's more details here, but they aren't for the squeamish, so I'll leave it at that. She is still in the hospital, but should be coming home tomorrow or Friday. Also, the two latest CT scan results came back negative for cancer - all clear - yay! I saw her today (Wednesday). She looks good, her spirits are up, and her leg hurts like an SOB.
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Like Ema said in episode 48, “. . .these are the only two things you do alone in life – be born and die. And when death looks at you it’s terrifying. But if you’re not alone, it makes a big difference.” This is why I’m writing this ‘cancer recovery journal.’ I was going to call it a ‘cancer journal,’ but it’s really about the process of recovery, not the disease itself. Ema is so right - a huge part of recovery comes from knowing that you are not alone. So many friends, some of whom we haven’t talked to in years, have come to our side and offered prayers, babysitting, running errands, and so much more. Sharing Ema’s recovery and our journey helps us stay connected to everyone who has offered help and sent well-wishes for a speedy recovery. There’s no reason to go through this alone as long as we have friends and family who are willing to be part of this battle.

Like many life-threatening diseases, cancer sweeps through a family like a cyclone – upending a normal life and challenging the very substance of our resolve. While the disease is destructive by itself, the treatments can leave the patient sick, weak, and vulnerable to other ailments. Where we stand today, we’ve eradicated the tumor, removed the tissue surrounding the tumor site, and are now healing those wounds before radiation and chemotherapy can begin. Both of these treatments are radical, potentially destructive measures that seem almost archaic in practice, but which are the most modern, effective ways to annihilate such a tenacious disease.

I wrote the first several entries of the journal without any expectations of publishing it in a blog. It’s a personal account of how I made it through each day knowing my wife, the person I had expected to spend the rest of my life with, may be dying. The journal starts on the third day after the news of Ema’s cancer.

Day 3: It’s 7:00 AM right now, and we somehow made it through the weekend. Ema is going to call her doctor in one hour to schedule an appointment. In the meantime, I wait, try to keep busy by doing even the most mundane things, and concentrate on my breathing which seems to soothe me a little.
Breathe in, breathe out. That’s about all I can do right now. For the past 36 hours I have been in a near dissociative state of panic. I feel at once restless, helpless, anxious, and angry. I want to lash out, blame someone, but I haven’t had the energy to do more than place one foot in front of the other, raise my hands to the keyboard and, against better judgment, sit behind the wheel of my car and steer absent mindlessly toward places I really don’t want to go.

Idle time is the worst. The moments between walking, driving, writing, working. The smallest interim of inactivity causes my mind to start spinning, thinking and rethinking worst-case scenarios. With so little information so far to go by, I’m forced to concoct possible outcomes, trying to sort out my feelings in each circumstance. What if the doctor tells us she has six months to live? What if this rare form of cancer has proven to have a 100% mortality rate? It’s exhausting and frustrating to think of these things. Although writing this down forces me to think about it all, I know that it will somehow help me in the long run.