Still recovering here at Stanford

Hi everyone,
After Thursday's surgery, Angela was released to the neurosurgery observation unit, like an ICU for brain surgery patients. There were three patients in the same room and one nurse who stayed there to look after all of them. Lots of attention but a little hard for Angela to rest. She was allowed to eat solid food the very first night, that was a good thing and much better than her last hospital stay!

On Friday, Angela went for a walk around the hospital with me, her sister Laurie and our pal Amy Tannous, who just flew into SFO from a trip to Washington, DC with her family, perfect timing! We got some snacks and hung out in one of the awesome hospital garden terraces for a long time. Angela said it felt like getting the band back together again.

Stanford has been treating Angela great as always. Last night she was moved to her own room at the very end of a quiet hall on the same floor. Too bad there were no cots available, or else Laurie was going to spend the night. Angela did fine but she said it was hard to fall asleep since the doctors had ordered some steriod medication to increase her blood pressure, which was been showing some low readings.

So far, Angela's main complaint is some stuffiness and a bad headache, which is all normal. The doctors check on her regularly and ask her to follow a series of short instructions like raising her arms and following a flashlight beam. So far so good!

Looks like she'll be in for another night and then we'll stay in the area an extra day until her follow-up appointment with Dr. Katznelson on Monday. Thanks for all the prayers!

-Josh

Angela is out of Surgey!

Hello all, just wanted to give a quick update.

We just spoke with Doctor Harsh, the main doc that removed the tumor. He said that everything went according to plans with NO complications! He also said he is confident they were able to remove the whole tumor! He even showed us a before and after shot of the space where the "pebble" was. It has been a long day, but she has been a real trooper as always. We should be able to see her in about an hour from now (5:30ish) I will keep you all posted as we find out more.

Thank you for all your continued thoughts and prayers!
-Josh

Surgery time again

It hardly seems possible, but the time has come for my next surgery. Josh and I are leaving for Stanford tomorrow so I can get one final MRI done to provide an up-to-date image of the surgical field to my team of doctors.

Surgery to remove my pituitary tumor is scheduled for mid-morning on Thursday, June 25. I have two separate teams of surgeons who are collaborating on this surgery, and take much comfort in knowing I’ll be in excellent hands.

My sister Laurie is once again joining Josh and me at the hospital for moral support. Josh promises to post updates on the blog, so feel free to check back for the latest post-surgery news.

Thanks in advance to everyone for all of your prayers and positive thoughts. You’ve already helped me get through the most serious surgery of my life, and I know you’ll be there for me now as well.

My prayer tonight is one of thanksgiving, for getting this far through the journey. Though I never anticipated another pebble in my shoe, I am hopeful that its removal opens up a whole new chapter of good health. : )

With love, hope and gratitude,
Angela

Happy and scared

When Camryn started nursery school nearly five years ago, one of the daily tasks at circle time was to analyze the weather. I remember those drives home from school, engaging my shy little girl in conversation about her day and inquiring how the class had voted to describe the conditions outside. The situation she found most intriguing was whenever “sunny” and “cold” happened at the same time. It was a complete contradiction to a three-year-old. How could a sunny day still be cold?

Weeks after I’d received the amazing news from Stanford’s pathology lab that the entire encapsulated tumor had been removed from my chest and I was – dare I say it – cancer-free, I would lay awake in bed at night with a similar contradiction. It had nothing to do with the weather, but everything to do with my emotional state.

Of course, I felt happy – overjoyed, even shocked by such an obvious miracle – but I was completely scared at the same time.

I just couldn’t shake the idea of “What’s next?” Maybe there would be more cancer, reoccurring in my chest or showing up somewhere new. After all, exposure to all those scans and radiation could kick-start something. Then there were the side effects of my three chemo drugs, linked to heart and kidney damage and possibly other problems. My Stanford endocrinologist, Dr. Katznelson, had warned me that health screenings would be a necessity, given the likelihood of that “fertilizer” (otherwise known as growth hormone) my pituitary tumor had been cranking out for so long.

Everyone around me was ready to celebrate – and who could blame them? – but it felt premature to crack open the bubbly. My conflicting emotions told me to hold back. It hardly felt like time for a celebration, not when I still felt fragile and was losing sleep over the unknown.

Instead, I became obsessed with finding a cause for that dreaded thymoma and desperately tried to find any correlation between my lifestyle and my initial diagnosis. It became critically important to read every food label to reduce my exposure to anything with a possible link to cancer. Still focused on my new job as a professional patient, I feverishly scheduled appointments with preventative health care professionals and renewed my interest in cancer prevention diets. I embraced vegetarianism and launched a diet based strictly on my blood type.

Oh, and I cried a lot. Just not when anyone could see me.

For all outward appearances, you see, I was a woman on the mend. After my month-long driving restriction was lifted, I relieved dear Josh of the job of taking our children to school and attempted small talk – about things other than cancer – with other parents. We stopped receiving all those fabulous meals on our doorstep (thank you to every single person who provided this tremendously helpful and delicious gift), and I started cooking again. I even got myself a new, stylish wig – with long, straight hair! – and attempted to embrace the new cancer-free me.

But thanks to that lovely tumor in my pituitary – also known as the second pebble in my shoe – I remained in “patient mode.” To reduce the tumor’s size and suppress that excess growth hormone, I continued receiving shots of a drug called Sandostatin. Unfortunately, this shot is the consistency of wet sand and is administered to the rear end. (The nurse has to literally jiggle the needle to prevent it from clogging.) Fortunately, I could get these shots in a familiar setting at the office of my local oncologist, Dr. Blair, and he could continue to keep an eye on my condition.

During one of my routine appointments, I found myself in an emotionally raw state. Josh typically accompanied me on these visits, but this time I was alone. As Dr. Blair entered the exam room and greeted me with his typical, “How are you doing?” I burst into tears. He looked a little shocked. This was not at all the behavior he’d observed since I was first tossed into his care last September. I was usually the upbeat, sassy girl who sat cross-legged on his exam table and rattled off a list of questions or health accomplishments.

I explained my fragile emotional state and how I’d become obsessed with nutrition and all things related to my health, and now spent my waking moments waiting for the other shoe to drop. “So is this what it really means to be in remission?” I asked through my tears. Dr. Blair gently reassured me that what I was feeling was similar to that of his other young cancer patients, and it would ease up over time. “But how much time?” I asked. “Honestly,” he said, “it could take years. But you’ll get there.”

I let that information soak in, though one nagging question still remained. “What caused all of this to happen?” I asked. Dr. Blair looked puzzled, so I rephrased my question: “I mean, what really caused my thymoma in the first place?” Now he just shook his head. “We have no idea,” he answered. “But we do know it was the cause of all your other problems – the sinus infections, and all the other illnesses you experienced because of your compromised immune system.” I nodded, shedding even more tears at the thought of all those years of poor health and the innocence of thinking it was all normal.

“Look,” Dr. Blair continued, “I’ll be honest – I was really worried about you when I first met you and we learned what kind of cancer you had. But,” he paused and looked me square in the eye. “I’m not worried about you any more. You’re going to be fine.”

Then he gave me a big hug. And I cried some more. But at least they were hopeful tears. What a gift – to allow me the chance to grieve everything I’d been through and give me the hope I needed to go on with my life, all in good time. I just love that man.

Since then, I’ve turned to therapy to get some help with processing what I’ve lived through so far and what’s to come. I was foolish to think I wouldn’t need any help, and instead could just snap back to where I was before all of this happened. (I’m not even sure I want to go back there, I’m now realizing.) After all, it’s taken me many months to get to this place and my perspective about everything has understandably changed. Embracing a “new normal” is harder work than I ever imagined.

For those of you who’ve wondered why I’ve fallen off the blogosphere, my apologies. I hope everyone can understand my need to take a break from blogging for a while, as I have needed to focus all my introspective energy away from the computer and into the comfy chair of my therapist’s office. Plus, I am just physically exhausted.

Thank you so much for all the cards, emails, invitations to socialize and all of the other thoughtful gestures that continue to come my way. I have been given a perspective that many do not get until a ripe old age, and I can attest to this: All the material things in the world are insignificant compared to the wealth of meaningful relationships. Not a day goes by that I do not recognize and give thanks for the bubble of pure love I feel around me.

At one of our earliest sessions, my therapist told me something that has remained with me ever since: “Your life is like a vase. When you learned you had cancer, that vase was shattered. Now you are trying to put the vase back together again, but you’re finding that all the pieces no longer fit.”

This is the best analogy I’ve come across. And yet it doesn’t disappoint; instead, it inspires me. As for that broken vase, maybe I don’t want to put it back together at all. Maybe it’s okay to pick and choose the pieces that make a spectacular mosaic. I’ve always loved mosaics anyway. : )

I’ve also learned that happy and scared need not be mutually exclusive. They are as complicated – and as beautiful – as a sunny and cold winter day.

The news we’ve been praying for

Thank you to everyone for your thoughts, prayers and concern during and after my surgery earlier this month. I had a wonderful support team in Josh, my sister Laurie and dear friend Amy while I was at Stanford, and even more help from my sisters Donna and Wendy as well as my parents once I returned home. It’s been a slow road to recovery, but each day I feel more like my old self as my body heals and I find it easier to move around.

We had a tremendous visit with Dr. Whyte at my post-op appointment last Thursday to discuss the results of my surgery. When we first heard the news it truly felt like a MIRACLE, something so out-of-this world amazing that I needed a few days to let the reality of its goodness sink in before sharing publicly. (So thanks for your patience.)

First of all, the pathology report indicated (as Josh shared previously on the blog) that my chest tumor was encapsulated. This means the tumor was self-contained in its own capsule rather than having arms, legs, tentacles, etc. (Hopefully, you get the picture.) We’d been told all along that this was the best possible scenario, since it would allow the surgeon to easily remove the entire tumor at once. Otherwise, there was risk of it being attached to other organs so the surgeon might have to leave some behind -- a sure risk for reoccurrence. No one knew what the tumor would look like until I was on the operating table and they saw it with their own eyes.

So, first and foremost, thank God it was encapsulated!

Secondly -- and even more amazing -- was news from the pathology report that they found NO ACTIVE CANCER CELLS remaining in the tumor! Dr. Whyte said this means that the four rounds of chemo worked. (Personally, I believe there was more involved than just the chemo to get such a wonderful outcome. But more on that later.)

With this finding, my actual diagnosis has now changed. This is because the tumor is no longer classified as Type C thymic carcinoma, the aggressive (and rare) cancer it presented as in the initial needle biopsy last October. Instead, it is now classified as a less rare Type B1 thymoma. This very detail improves my long-term odds significantly! According to Stanford, 83 percent of patients with a Type B1 thymoma have no reoccurrence 10 years later. Isn’t that great?

Again, thank God.

The last bit of news was not necessarily bad, but could possibly result in some additional treatment. According to the pathology report, there was evidence that some of the original cancer cells had entered into -- but not through -- the capsule that held the tumor. But since those cells are no longer considered cancerous, the risk is not likely significant. I may need radiation therapy, just in case, but Dr. Whyte said definitely NO MORE CHEMO! This particular finding will be addressed when my case is presented to Stanford’s tumor board on Tuesday, so I should know more later in the week.

In case I was concerned about what the future holds, Dr. Whyte informed me that Stanford is not done with me yet. He said they will monitor me closely from now on, and I’ll go back to the Cancer Center for my first recheck this summer. In the meantime, he told me to continue focusing on healing from surgery -- since I’ll need to be in the best shape possible for my next surgery to remove the pituitary tumor. Josh and I offered our most sincere thanks, as well as some Girl Scout cookies, to both Dr. Whyte and his amazing staff. In retrospect, it seemed like an awfully small gesture. But how exactly do you thank a renowned surgeon for helping to save your life?

After my appointment was over, Josh and I left the Cancer Center on a cloud. We then celebrated over a nice lunch with our friend Ali and enjoyed the beautiful sunshine. With a huge weight off my shoulders (and out of my chest), I felt like I was seeing the gorgeous Stanford campus for the very first time. It made me also think how nice it would be to have one (or even both) of our children attend college there. (Note to self: get to work on that college fund!)

Finally, we dropped by the hospital’s cardiac recovery ward to say hello and offer our thanks (and more cookies) to all the wonderful nurses and staff. It was an emotional homecoming, to say the least. I felt like an entirely different person than when I last saw them, along with the strange realization that Room 224 belonged to someone else now. I said a quick prayer that the next occupant might experience the same positive outcomes I had.

Even though it’s been days now since I got this phenomenal news, I still feel like pinching myself. Did all of this really happen?

The giant scar running down my chest says yes.

But the giant smile on my face says even more.

With love and gratitude,
Angela

Keep this train moving

From the moment I received my surgery date of March 2, it was as if I had boarded a speeding train that could not be stopped. It didn’t matter what happened or what news came forward during those two weeks prior. Reminders arrived about parent-teacher conferences, the latest season of T-ball, Hayden’s six-year check-up, Camryn’s First Communion, Girl Scout cookie sales, income taxes, medical leave documentation, insurance authorizations, you name it.

Pretty routine stuff, right? I honestly tried to absorb and respond to as much as I could, but it all quickly became a blur. I walked around the house like I was lost. The diagnosis of a second tumor, this one in my pituitary -- news I’d received after the short-lived relief of finishing my last round of chemo -- had taken the wind out of my sails and left me searching for my bottle of Xanax. Some days I woke up feeling okay with it, but later I’d be mad, followed by scared and anxious, and then back to okay again.

The worst part of my confused emotional state was that I wanted to hide it from everyone. I’d just started getting past my post-chemo blues, so why draw any more attention to my altered mental state? And writing about it seemed like an even worse idea. (Hence this blog, written weeks after the fact.)

The only thing I knew for sure was that I had to keep this train moving.

With little more than a week till surgery, Josh started coming down with a cold. This was the last thing my poor guy needed. But there was no time for him to stop and rest -- not when he had deadlines to meet at the office and was preparing for a lengthy leave to be my caregiver once again. I knew that the stress of it all was getting to him, and this is how his body was responding. Fortunately, word got out and our dear friend Nan Fitzpatrick quickly called offering to help. She had the best remedy we could have asked for -- homemade turkey soup.

I called Josh at work to tell him I was coming by with the soup and asked him to meet me on the side of the building. I wanted it to be a quick exchange, partly so he could get some nourishment and -- fine, I’ll admit it -- also because I didn’t want to be spotted in my PJ bottoms and chemo cap outside the building where we’re both employed. Though my family and close friends have gotten used it, it’s still sometimes hard to accept the fact that I look like a cancer patient. And this was not Take Cancer to Work Day.

When I drove toward the building, I spotted Josh standing near the parking meters in the shade with another man. Maybe a coworker, I thought as I parked the car. But I was completely wrong. Instead, it was a friend we’ve known for many years -- Joe Zaniker -- an amazingly talented artist and someone I truly admire. What a happy coincidence. I had managed to show up at the same time Joe had also arranged to meet Josh. I wondered why Josh hadn’t mentioned it to me on the phone.

That’s when I spotted the large canvas Josh was holding behind his back. Joe, this dear soul who’d gifted me once already with an original drawing during chemo, had decided to thrill me again. This time it was a gorgeous painting that carried a similar theme, using imagery I have long admired in his work. The piece featured four images atop of a hill, leaning into each other and backlit by a starry night sky. It represented our family, Joe explained, and was a reminder that our love would help us overcome any adversity.

Talk about perfect timing. Just as I was getting ready for what Josh was calling my personal Super Bowl and the anxiety was hitting its peak, I was met by yet another example of pure love that grounded me once again. The tears came quick and I held on to Joe for a long time, sobbing into his shoulder. Josh got teary too. And at that moment I didn’t care who saw me. It was the furthest thing from my mind.

We made two trips to Stanford that week. The first was a consultation with the head of Stanford’s pituitary department, an endocrinologist named Dr. Larry Katznelson, to discuss my new tumor. I brought a CD with the results of my MRI, and after I was interviewed at great length, we huddled around a computer monitor to view the images of my brain. There, in the space just behind my eye sockets, was the tumor -- more specifically known as a pituitary macroadenoma. It was a garden variety, he assured us confidently. After I asked him point-blank, he explained this meant it was benign. Whew.

We were shocked to learn there was a correlation between the pituitary tumor and my original cancer diagnosis. According to Dr. Katznelson, the pituitary tumor was causing excess growth hormone to be secreted. This, he explained, was feeding the tumor in my chest “like fertilizer,” as well as any other potential cancer elsewhere in my body.

It was intriguing to learn what else that excess growth hormone was to blame for -- many symptoms that I’d been experiencing for years. I’m talking about the very symptoms that many doctors had explained away each time I’d tried to address them. The increase in my ring size and my shoe size, perspiration, headaches, breakouts, skin tags, even the changes to my tongue and jaw that ultimately prevented my adult orthodontia from working! Over time, I’d heard reasonable excuses for nearly all of these things.

But now someone was finally able to connect the dots on all these bizarre symptoms with a single diagnosis. It was the second time I felt like I was standing on hallowed ground at Stanford. Based on how long I’d been experiencing my symptoms, Dr. Katznelson suspected I’d been living with the pituitary tumor for as many as eight years. Counting backward, I realized that was right around the time I was pregnant with Camryn. A coincidence?

It scared me to think what the chemo had been up against, now that I knew my own body had been working covertly to feed and grow that darn tumor in my chest. Dr. Katznelson then went over the treatment options for a tumor that measured all of 1.3 centimeters -- considered large by medical standards! We agreed that I would begin shots of a medication to suppress the growth hormones until I was able to have the tumor removed by a neurosurgeon.

But first things first. There was already one surgery looming around the corner. And that train was moving full speed ahead with no intention of stopping.

We went back for the second trip to Stanford on a Wednesday evening, and were happy to visit and stay overnight at the home of our friends Ali and Bryan Kolozsi. This guaranteed our arrival for the first of many pre-op appointments and tests Thursday morning. Dr. Whyte, my surgeon, as well as the hospital staff continued to amaze us with their level of care and concern. One particular anesthesia nurse, after making the connection that she had family leaving near us in Sacramento, went so far as to give us her cell phone number in the event that she could help me with anything after I’d returned home from surgery. So kind.

We got things organized for the five days we'd be at Stanford and planned the logistics for the kids during those days that we’d be gone. Camryn and Hayden seemed to be taking it all very well -- no noticeable anxiety, unlike their momma -- and were actually excited at the idea of Aunt Donna coming from Tahoe to stay with them again. I’d found myself joking about it many times during these last several months, that as along as their routines were kept as normal as possible, our kids seemed downright unflappable.

Two days before surgery, I joined my family at Sunday mass -- my first visit back since that wonderful service I’d attended on Christmas Eve. Looking for some words of wisdom to hold on to, I approached one of my favorite priests -- Father Franklin. He listened as I explained what I was facing, then smiled and told me he believed it was no coincidence I was going into surgery just days after Ash Wednesday -- since the experience itself was my own Lenten journey. He added that while I might not understand at this moment the reason why everything was happening, it would be apparent to me someday -- most likely when I’d have the opportunity to help another person walking a similar path.

And there I was, grounded again.

Looking back, I had so much to be grateful for in the time leading up to my surgery. Tremendous support and well wishes poured in during those last days. I was wined and dined by my closest girlfriends and received gorgeous flowers from my sweet cousins in Canada, along with other lovely gifts, cards, emails, phone calls and visits from so many other special people. I even received a second binder of "love letters" -- this one from my wonderful family and in-laws -- containing messages and photos from loved ones both near and far. Heartfelt tributes and words of encouragement were collected from both the young (my nephew, Isaac, age 10) and the young at heart (Josh’s great-aunt, Anita, who is truly ageless). All of these loving gestures gave me strength when I needed it most, and for that I am truly blessed.

After a nice lunch out with my family and just hours before Josh and I left for Stanford, I got news of one last surprise. Riny Kooymans, who is married to my cousin Teresa and has known me since I was a little girl, had done something very special for me -- all the way from Canada. Here is the contents of an email he sent to my sister Wendy:

Being a cyclist, I follow the Tour De France every year, especially when Lance Armstrong was on his comeback from cancer. I have read all his books about his fight and recovery, and find him a great inspiration (and now Angela is my inspiration!). After Lance retired from international cycling, he devoted all his time to the LAF (Lance Armstrong Foundation), which raises funds and awareness for the fight against cancer.

This year, Lance will come out of retirement to race once again in the Tour De France. I had a chance to send Lance (LAF) support for the fight against cancer, and by doing this, he will be riding in honor of Angela. I have attached the link to Lance's website so that you can see Angela's name (along with others) under "Riding in Honor".

http://www.rideforlivestrong.com/riders/armstrong.html

When Wendy called me to share the news, I could hardly believe it. Then I quickly checked the website and spotted my name near the very top of the scrolling list. How cool is that? I could now add Lance Armstrong to my arsenal of supporters! It was just the boost I needed to take me on the final leg of the journey. I went to sleep that night, tucked into bed at a hotel just blocks away from Stanford Hospital, actually feeling excited about what the morning would bring.

The train was nearing the station at last.

Day 5 – Home!

Hello all, sorry I have not updated the blog in a few days but things has been moving pretty quickly. Early Friday morning Angela’s doctors came in, checked her over and were VERY happy with the progress she made. After signing her release papers they went over all the do’s and especially the don’ts for the next few months. It’s going to be a long recovery time, but I am confident she will do it with flying colors! I am happy to say, she is home now getting some much-needed rest.

On another note, Hayden’s T-ball game and parade was this weekend and just like his mom, he did great as well. Also, Camryn’s class produced a poster for her mommy with drawings and notes of encouragement, its hanging in Angela’s room. I am so proud of both our kids who were troopers this last week. For me, one of the most precious moments was the first time our kids saw their mommy and gave her a great big, very gentle, hug and lots of kisses.

Thank you for all of your continued thoughts and prayers over the past few months, we feel it! I promise, Angela will soon be back at the laptop writing to you all just like she loves to do.


Love,
Josh