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."