Heading into the Holidays

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

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

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

“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

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

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

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!

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

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

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.

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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

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

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.
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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

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. . .

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.