Wow…almost a month has passed.

I was in China (Beijing) and Japan (Tokyo) for two weeks on business - the first major trip I’ve taken all year. As you know, I haven’t wanted to leave Sheila’s side, so this was a tough trip for both of us.

And more importantly, for the past month I’ve been enjoying the sense of normalcy that’s escaped us since January. Sheila has been relatively pain free and the side effects from the new drug(s) have been very mild. She smiles and laughs a lot. So that’s very nice.

We saw Dr. B yesterday and I didn’t like going back after a month break. (At least a break for me. Sheila’s was there while I was in China to get the infusion treatment to help her bones fight the tumors. It wasn’t a pleasant experience and my thanks goes out to Susan W. for being with Sheila and helping her through it.)

So being back at Thornton was a bit of a cold splash in the face. A reminder that something insidious is still very much a part of our life.

My concern is that Sheila’s lost about 7 pounds. That’s a lot for her. She’s thin to begin with so weight loss is not a good thing for her, health-wise. Her appetite is all over the place, mostly down. So I’ll have to go back to cooking more. I see a big pasta meal in her future this weekend.

I don’t have much more to say today. I’m anxious and tense. I’m worry about her all the time. I love her so much and desperately want her to get better.

Our appointment was for 2pm and we waited…and waited…and waited.

Neither of us had eaten much today. I had a yogurt at home and a cup of English Toffee “coffee” at work. I’m not sure what Sheila had to eat. I left before she was dressed. I couldn’t sleep even though we didn’t go to bed until 1am. I was up by 6. So as the day dragged on, the knot in my stomach grew and by 1 there was no room for food.

The waiting room was filled. Again. I’m not sure why, but for as many times as we’ve been there it always catches me off guard. I’m used to seeing busy waiting rooms. But it’s the realization that most of the people are there to get treated for one form of cancer or another. And each time that realization doesn’t hit until suddenly the collection of addled, bald, sad, worried, preoccupied, and/or wheelchair-bound people hits a subconscious tipping point. This is not your typical waiting room. It’s a worry room.

It was after 3 when they finally called Sheila’s name. By then the knot in my stomach felt like a heavily consumed meal.

After the usual weigh-in and medical history, we waited, again. Finally Dr. B and the research associate showed up. Peter is a young Asian guy. Always smiling. A bit uneasily, but he makes the effort.

Dr. B launched into an in-depth, rather graphic monologue about the side effects of the Tarceva medication. Somehow the words “rash,” “acne” and other terms take on a gravity that’s much heavier when spoken with a Russian accent.

Then she talked a little bit about the trial drug - if Sheila should actually get that one instead of the placebo.

We both sat perfectly still, intently listening to every word, my eyes locked on Dr. B’s lips for extra measure. My ears have grown accustomed to her accent, but I still watch her lips just to be sure my ears and brain are in sync.

It was at that point that she clasped her hands together, smiled, and looked at both of us as if she was done and said, “Any questions?” I smiled and looked at Sheila, who looked at me, then we both looked at Dr. B. “A…how about the results of all the tests that Sheila took? You haven’t said anything about that.”

Dr. B turned to the computer and as she logged in she started to say things, but I could tell that she was choosing her words carefully.

What she was avoiding telling us was that the tumors on Sheila’s spine (L3) and rib are back and bigger than they were months ago.

Dr. B and I both looked at Sheila and pre-emptively, Dr. B told her not to be upset with the news because it wasn’t going to change the course of treatment. She continued that it didn’t matter if Sheila has two, four, or five tumors. The chemo didn’t work as hoped and we have to move on to the next phase. The good news, she said, is that the tumor just above Sheila’s stomach hasn’t reappeared at this point.

Much to my surprise, Sheila was fine. No tears. No real reaction. Just calm.

Sheila asked a few questions and then we….moved on.

She got 3 ekg’s for the baseline report. Then we went and met with the chief pharmacist to get the trial drug (or placebo), then to another pharmacy to get the Tarceva.

It’s $3,800 a month without insurance. About $127 per pill. Talk about bringing home the debate on health care costs. Fortunately the insurance should cover most of it.

We didn’t talk about anything as we walked to the parking lot. We hugged for some time, kissed and said goodbye. She was heading downtown to have dinner with friends.

So she’s becoming quite the professional patient. She’ll be giving herself a shot every night to prevent clotting (although Tarceva can cause hemorrhaging), two pills everyday, blood tests every two weeks, a CAT scan every 4 weeks, and an infusion of Zumeta every 4 weeks to help strengthen her bones against the damage the tumors could do to her rib and spine.

Through it all she’s been amazing. I’m so proud of her strength and fortitude, even in the weak moments. It’s for those reasons, and many others, that I hold out hope that she will prevail.

Sheila’s been undergoing a series of tests this week and has two more on Monday to see if she’ll be eligible for another trial. She’s been having pain in her neck and stomach, so we’re hoping it’s not a sign of the tumors reemergence. We’ll get the results of all the tests (bone, brain, abdominal, neck scans and blood tests) on Tuesday.

Dr. B and the nurse never called back yesterday to give us the results of the CAT scan. And our inclination anymore - and our history throughout this process - is that no news doesn’t usually mean good news.

So Sheila called the on-call radiologist this afternoon to find out the results. The doctor called back and said that while there doesn’t appear to be an embolism, it does look like she may have pneumonia in her left lung (the last time it was in the right lung), but worse…the tumors have started to grow again and have increased 50% since last month. So that’s most likely the source of the pain Sheila’s feeling in her chest and neck.

We spent the better part of a half hour crying on the bed and holding each other. What are we to do???? It’s breaking our hearts. We’ve just started our married lives together….

Earlier today, before we got the news, we were sitting down looking at our finances and planning what would be covered by our joint checking account, changes in investments, buying a home together, etc. and I could tell that Sheila just wasn’t engaged. She had a distant, sad look on her face as she propped her head on one hand. I asked her what was wrong and she started to cry and said, “What does all this matter? I won’t be around very long for any of this to make a difference or be important.”

I tried, as I have countless times before, to assure her that she’ll outlive me, that we will live a long and active life together. We have many dreams yet to fulfill. Many places to visit and adventures to be experienced. Friends to be with. We found each other and have an amazing, passionate love affair. It can’t be cut short, damn it!!!!!!!!!!

As much as I truly try to believe that and convey sincerity in my voice, after having said it so many times, with the setbacks we’ve had, it can’t help but sound futile or perhaps even disingenuous.

The other day when she was crying about the clot and pain in her leg, I said something about other patients beating the odds and “living long” and started listing off the years that I had heard or read about and she sternly locked eyes with me and almost angrily said, “there’s no one in the support groups that has made it that long.”

I was momentarily brought back to the first time I went to a support group meeting with her at Scripps. After the meeting I was in the hallway talking with two patients while Sheila stayed back in the room to talk with another. The two women somberly reflected on those members who had passed away - citing their names and illness duration. I remember constantly looking over my shoulder to see where Sheila was, because I didn’t want her to hear the depressing news. Little did I know that she already knew. 

I regrouped and lamely tried throwing out lesser numbers, and she just shook her head, no, while big tears streamed down her face. I felt so useless, so helpless. Yes, I know that being with her and comforting her is a help. But it isn’t enough. It just isn’t. I don’t know what to say or do to help her overcome the fears she’s confronting on her own mortality.

The inescapable reality - barring good fortune/luck - is that the mortality rate for lung cancer patients is quite high.  We’re reminded of it quite often at the hospital.

It’s very difficult to reconcile all this with the, outwardly, healthy woman who shares my life. By all measures Sheila appears fine. Countless people commented at the wedding about how great she looks. You can just tell that they are inwardly thinking - “..she doesn’t look sick at all. She’s recovered quite well.” Sheila doesn’t look like the stereotypical cancer patient. She never lost her hair and her weight loss has been minimal. It’s all inside of her.  

So the mere process of planning for our future painfully reminds us of the nebulous definition of “future.”

While I was in the radiology waiting room, and Sheila was getting the CAT scan, I received a call from the trial coordinator breaking the news that the long-awaited trial was approved today, and he was on his way over to drop off the paperwork! Sheila appeared just as he was dropping off the 17 page agreement. 

When he told Sheila the news she started crying and buried her face in my shoulder. It was a very great moment. What a relief to hear that news!!!

The results of her clotting test came back normal, so the dosage she’s taking everyday is the right amount.

We’ll find out tomorrow, hopefully, about the CAT scan.

Sheila was watching a movie tonight, “Once”, while I was reading the paper at the kitchen table. I looked up and saw her in profile and still find myself compelled to stare at her. When she has her hair up in a ponytail I get to see her beautiful long neck, her cute ears and the sculpted line of her jaw. She is so pretty! I can’t believe she’s “mine!” Yeah!!!!! 

I know it’s only been a little over a week since we cemented our commitment, but we both break out with spontaneous big grins every time we get to introduce the other as husband or wife. And when we’re home we flash each other our rings from across the room and do something like, “Hee, hee, hee…”

We’re not quite doing the Tom Cruise jump-on-the-furniture thing, but pretty close. It’s so wonderful to love someone so completely and comfortably. Even though we’ve been together over 4 years, it’s still fresh.

Well, enough gushing. It was nice to “go there” for a few minutes. A nice escape from the other stuff….

When we arrived at the hotel on Sunday after our wedding we discovered that Sheila had developed a clot in her left leg of sufficient size to partially block the blood flow to her leg. Her calf and foot had swollen a bit and turned purple as the blood tried to find alternative paths back up to her thigh. By Tuesday, the24th, she was back in the hospital getting an ultrasound. The radiologist confirmed that the vein behind her knee was almost 3/4 blocked.

So she first started using heat packs to open the veins to increase the circulation. That helped a lot. Now it’s “just” her foot that’s slightly purple. She went in yesterday to get tested to find out why the Lovenox is not preventing the clots. And she started using compression stockings to help force the blood back up her leg.

Last Tuesday, after we returned from the ultrasound, she also got word that the clinical trial that was supposed to start this week or next has been postponed by the FDA. Apparently there’s an issue between them and the drug company. No date on when it’ll happen. And no Plan B at this point either.

This past Sunday she developed intense pain in her chest and neck. Our fear was that it’s been a month since she stopped chemo and perhaps the two tumors had started to grow again. So she went to see Dr. B yesterday and she thinks Sheila has a pulmonary embolism (PE) - a blood clot in her lung. So tomorrow she’ll be getting a special type of CAT scan that is supposed to determine the size and location of the clot so they can determine if they need to go in and remove it.

The last PE she had triggered the pneumonia that landed her in the hospital for 3 days and killed off the lower lobe of her right lung. Hopefully that won’t be the case this time. She doesn’t seem to have any of those symptoms.

My bride, my sweetie, must survive all this. We’re going to live together a long, long time.

The wedding was fantastic. Sheila looked absolutely beautiful. Her hair and especially her dress, were stunning.

I’ll never forget the look on her face when she first appeared at the top of the stairs. Her eyes were “frantically” searching for me and it looked like she was on the verge of crying her eyes out at the same time. I just wanted to run back and kiss her. I started crying when I saw her. A lot of pent-up emotion in both of us. This has been a long time coming.

It was unusually hot, so that was the only unfortunate part. Should make for some “interesting” photos. I’m sure I’ll be explaining for years that the river of sweat on us was not from nerves.

The view from The Thursday Club was spectacular. The marine layer pretty much burned off, so we had an excellent view up and down the coast. Lots of people liked that.

It looked like everyone showed up, which was very nice. It was especially great having Tammy, my daughter, there. I miss seeing her, so it was really nice having her around for almost a week. And one of my sister’s, Sybie, also flew out. It was good seeing her as well. It’s been a few years. 

Sybie was the hit of the event with many of the single guys. Most people apparently didn’t know that I have siblings and she’s very attractive, so they kept her busy.

Our photographer, Garrett, gave us an 11×14 photo from our engagement session as a present, so many signed the matting. We’re going to have that framed, of course, and put it up in the house. He also took an incredible photo of our bears at sunset. It’s one of the nicest photos I’ve ever seen. We can’t wait to see the finished photo deck. It should be quite nice.

We danced until 9pm or so - including a father/daughter dance to Barry White (of course!) and then headed to The Lodge in Torrey Pines. We stayed in room 425 overlooking the golf course and ocean. Very nice.

I love being with Sheila and it’s wonderful to have the ring on everyday.

My pulse rate felt like it was over 100 as we waited for Dr. B. She was about 20 minutes late and both Sheila and I were pacing the exam room. The smile on Dr. B’s face said it all as she walked happily down the hall.

The good news is that, with the exception of two tumors, they’re all gone!!! She still has a small one in her left lung and another small one in her chest. But what an incredible result in 6 months!!!! We are so relieved and happy. It’s been a rough road.

And this means that she qualifies for the clinical trial that starts in July or August. She has to wait until the end of this month for the trial to be sanctioned and sign a bunch of waivers. Plus she has to wait at least a month from the time of her last chemo, so that puts her in the first week of July anyway.

We’ll be celebrating this weekend!!!!!

Thanks for all your good thoughts, prayers, and reiki sessions.

Well, Raul had one shot and mercifully, he did it. When he came out of the room with a relieved look on his face it reminded me of the hold-your-breath feeling you have awaiting the birth of your child. The tension leading up to that moment was palpable.

After he injected the isotope Sheila was able to sleep for 45 minutes while the nuclear material sought out any remaining active tumors. Hopefully it didn’t have any to find.

Then another 45 minutes in the machine and we finally got out of there, four and a half hours later than expected. But it’s over for now.

She’s bruised on both arms in a number of spots, but other than that she’s in good spirits today. It must be a relief to know that you’re not going to be poked and prodded for a few weeks. Other than the big appointment on Monday, we’ll get a break from hospitals and doctors for a month or so.

We’re planning on going to Florida for a week, if possible, in July. She’s never been to the Keys, so we’ll visit my daughter in Ft. Lauderdale, and then head south to Key West. No set itinerary. Just stopping when and were we feel like. It’ll be great.

I love you, Sheila…. 

Sheila got her CAT scan yesterday without any problems. Yeah!

Today she’s trying to get the PET scan done. It was supposed to be started at 10:30am, but they’ve had a heck of a time getting a needle in her in order to inject the isotope - her veins keep collapsing. They’ve tried about 6 times and it’s now 2pm and no luck. One of the times the blood actually clotted in the syringe when they were checking for flow. I didn’t think blood could clot that fast. But she’s switched to every other day on the Lovenox injection (to prevent clots), so that may not have been a good thing. She was just getting tired of injecting herself in the stomach everyday.

We’re waiting for the supervisor, Raul, to arrive from another facility and they said that would be around now. If he’s unable to get it started then we’ll have to go to the cancer center in LaJolla to get them to do it and then drive back to Sorrento Valley where the machine is located.

Of course, we’re hopeful that Raul will be able to get it done. Once he gets that started, then they inject the isotope, we wait I think it’s 45 minutes and then she goes into the machine which also takes about 45 minutes to complete the scan.

She’s not been allowed to eat anything since last night, so she’s REALLY hungry.

Well, while I was writing this Raul showed up. He’s in there now giving it a shot. Hopefully he’ll be successful.