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