The Easiest Way to Help Find a Cure

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

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

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

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

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

*** 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

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

*** 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

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!

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

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

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

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

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. . .

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. . .

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!

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

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!

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. . .

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!

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

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

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

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

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

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

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?

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

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

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

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

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

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.