Chemotherapy

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

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