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!

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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