Cycle 1

August 23, 2012

Our decision was made to do chemo first then possibly doing surgery at a later time. However, the main purpose of surgery is containment. Since Carmen’s cancer had already spread, it would defeat this primary purpose. The other reason to do surgery is to alleviate any symptoms she may have. She had no symptoms, so all surgery would do is cause more hardship with little to no long term benefits. This was the view of her oncologist and it made sense to us as well. It took us time to understand this, but now we do.

This day was going to be a long one. Carmen’s regimen was a 2 drug cocktail. One is called Oxaliplatin and other Xeloda. Oxaliplatin is an infusion drug which was administered through her vein. In order to facilitate the infusion, a PICC line was surgically inserted into Carmen’s left arm. The end of the line protruded from her arm to connect to the infusion drip bag. The other end followed up her arm as it traveled through her vein and ended directly into her heart. This was done in the morning and between the prep time and insertion, it took a few hours. The good thing about a PICC line was that she would not be poked each time she received the infusion. Carmen has a terrible phobia of needles. I would’ve thought that she would have overcome her fear by now. Delivering 3 kids and having dislocated her right shoulder twice, she’s seen her share of needles. The 2nd drug, Xeloda, was in pill form. She would take 3 in the morning and 3 at night for 14 days. The infusion was once every 3 weeks. So each cycle essentially lasted 3 weeks with the 3rd week being a “free” (of chemo) week.

Let’s talk about side effects. Neither of these drugs caused hair loss. So Carmen was able to keep her hair throughout her treatments. The main side effects of Oxali were extreme sensitivity to anything cold which was immediate, and a longer term effect of something called Neuropathy. Neuropathy is basically nerve damage to her finger tips. This wasn’t noticeable right away, but the effects we’re told would linger for quite some time, perhaps a full year after the final Oxali treatment. The first side effect was a bit scary. Her oncologist warned her to avoid anything “cold”. This meant no metal door knobs at room temperature. Opening the fridge door would be painful, and opening the freezer would be dangerous. Of course she had the obligatory nausea with Oxali and extreme fatigue. Her body had never experienced anything like this, so for her to get the Oxali that afternoon followed up by 3 Xeloda pills that evening, I can safely say that her body was revolting and saying “what in the world did you just do???”

The infusion took about 4 hours which basically meant we spent the entire day at the hospital. When we got home that night all she wanted to do was lay down and rest. No appetite, no energy, extreme nausea, and was freezing. This was on a Thursday. The next day she seemed to be doing better, but as our oncologist friend warned us, the effects may show up much stronger after the 2nd day. Sure enough Carmen had a horrible Saturday. Keep in mind she’s now on 6 Xeloda pills a day for the next 14 days. She didn’t eat much or do anything except lay in bed. For someone so active and constantly on the move to be in bed all day was a new experience for her, but also for me as well. The scariest part of this was that this wasn’t the most toxic regimen. The Epirubicen was supposed to be the most toxic one so I couldn’t imagine her being on 3 drugs.

The Oxali effects were strong. After a few days Carmen began to recover from the infusion and became a bit cocky thinking the worst had passed and neglected her oncologist’s warning to avoid anything remotely cold. So one day she went outside to walk her mom back to the car. There was a slight breeze that afternoon. Her mistake was going outside without covering up her neck. When she came back inside she picked up a grape (room temperature) and took a bite. This is the part of the story where she realized maybe she should take warnings a bit more seriously. Her face froze as she bit into the grape. Her throat began to constrict and she felt like she couldn’t breathe. The “coldness” from the outside breeze and the grape were too much for her. For a few seconds I too froze as I began to prepare for immediate action in case she choked. Luckily she spit it out quickly and the effect subsided. From then on, we heated everything before she ate or drank. After about 7 days, this effect subsided. We just needed to be careful for the first week, especially the first few days.

Another ugly side effect happened at nights when her calves would cramp up. This usually happened in the middle of the night and was timed perfectly to when I entered REM sleep. So between getting up to feed Audrey and stretching Carmen’s calves, I became a zombie. Oh yes, our little Audrey. She was such a good baby. Within the first few months she was able to sleep about 5 straight hours giving me the rest I desperately wanted. As for Olivia and Ella, they were shuttled around like orphaned children to various places by various friends and family. We needed the help and we were grateful to receive it.

Not much fun during these 3 weeks. But I believe the prayers from so many people helped us get through it. During this time when things calmed down a bit we had time to reflect and ask why and how this could happen. Carmen never smoked, wasn’t a drinker, and ate fairly well, hardly any junk food. There had to be a reason for all of this. As Christians we need reasons for why things happen because we believe that things do not happen in a vacuum. As there is purpose in our lives and our existence, we felt there should be a purpose for our current situation. The conclusion we came up with is illustrated in the Bible. In John 9, Jesus heals a blind man. The question posed to Jesus was “who sinned, this man or his parents, that he was born blind?” The answer Jesus gave was “Neither… this happened so that the works of God might be displayed in him.” He then healed the blind man. I began to view Carmen as the blind man in the story. Her life would be a testament to the healing power of God and His grace in her (and our family’s) life.

What now?

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First 2 weeks of August 2012

The days following this outrageous news were sobering and difficult. We weren’t able to talk on the phone, so I resorted to texting the news to family. The first person I called was a church friend who is an oncologist to share the test results and CT scans. The conversation didn’t go well because I was pretty incoherent. I didn’t know where to start. How do you break this news to someone who’s expecting to hear great news of a new baby? I slowly began to understand what depression meant and felt like. I’m sure Carmen’s state of mind was in complete disarray just as mine was.

We couldn’t get information fast enough. We saw numerous doctors and asked countless questions. The only straight answers came in the form of the actual diagnosis and nothing more because nothing more could be given to us. This was very complicated and the cancer was pretty rare so no one really knew what they were dealing with. Plus the fact that it had metastasized meant things were soon gonna go from bad to ugly in terms of prognosis. Each passing hour felt like days and each day felt like weeks. We wanted answers and to see the oncologist ASAP. We were finally able to secure a meeting with the head of oncology at Kaiser.

As I was scurrying to get all of these appointments lined up, we kept coming back to our new baby. Carmen was dealing with the pain from C-section while trying to be a mom to an infant. Those few days were a blur. I kept hoping that this was just a bad dream and that I would wake up from it. But each morning I would wake up with a heavy heart and sadness. Olivia and Ella were being watched by family and wanted desperately to see us and we desperately wanted to go home to be with them so finally being discharged felt nice.

Our first meeting with the oncologist came about 2 weeks after we were discharged. Yes, this seemed like an eternity away. Before we met the doctor I kept telling Carmen “no matter what you hear in there, don’t worry. Things are going to be ok”. I knew we weren’t going to hear anything we wanted to hear and sure enough it was all gloom and doom. The survival stats on this type of cancer were terrible and her initial prognosis was even worse. Again, it was too new. All they could go by was prior experiences from past patients in research papers. Those people in those papers didn’t fair so well. So we were speechless and beaten down a little further.

Her oncologist had conducted a tumor board prior to our visit. This board had recommended surgery to remove her entire stomach as well as the 2 ovarian tumors followed by a heavy regimen of chemo. This regimen was called EOX, composed of 3 chemo drugs. These were very toxic especially the first drug in the acronym. The “E” would cause her to lose her hair. The surgery would be a very extensive. Seeing that she just came out of major surgery we weren’t sure how she would handle it. She needed to recover physically so if she had her stomach removed, how would she get her nutrients? It’s one thing to remove it when you’re healthy, but right after giving birth, your body is in a state of flux. In the meantime, our church friend also did a tumor board with his colleagues and they had concluded that we should go chemo first, then surgery, maybe. This 2nd opinion was shared by the UCLA oncologist who would be Carmen’s oncologist starting in January. He also recommended dropping the E from the regimen because he didn’t believe it added much to the effectiveness against the cancer, but it was the most toxic of the 3. So we dropped it and the date was set for Aug 23, 2012. The morning would be reserved to insert a PICC line into her arm. This tube was surgically inserted directly into her heart. The end of the line hung out of her left arm. Showering would be a challenge. That afternoon was her first chemo treatment.

Carmen was recovering well from the C-section and breast feeding by now. However, she would need to stop breastfeeding once she started on her chemo treatments because the drug would get to the baby. So she fed her half the time and pumped for 2 weeks. During those 2 weeks she was able to save enough to last Audrey for another 6 weeks of breast milk! We had a freezer full of breast milk. Then the painful part came when she had to stop the flow so she could start chemo. This was both physically painful as well as emotionally. That week she stopped breastfeeding causing her breasts to engorge, had continues pain from the C-section, and was about to start chemo. In hockey this is called a hat trick.

Audrey was such a trooper. She didn’t complain about going back and forth between formula and breast milk. In fact she was well versed at drinking from a cup, nipple, and bottle. As long as it was food she didn’t care how it got to her mouth. She was such a good baby. God definitely gave us an angel baby during this time.

We had many more meetings with other oncologists for 2nd and 3rd opinions. Audrey came to every one of those meetings. Olivia and Ella were transferred from person to person while we went from meeting to meeting. Our 3 daughters definitely kept us occupied and our minds a little more sane. And our prayer life got a little stronger with each passing day.

Baby Audrey

Such a good baby

Such a good baby

July 27, 2012

It was certainly a beautiful morning to have a baby. Carmen’s C-section was scheduled for that fateful morning. We knew it was going to be a girl, our 3rd daughter. Olivia was 6, Ella was almost 4, and our newest member was about to join us. We didn’t have a name for her yet nor would we until the 3rd day. All of her original hospital documents called her “Baby Chang”. There was no rush.

The C-section procedure was going well. Everything seemed routine and normal. However, her doctors noticed 2 large ovarian cysts which they kept to themselves at first. They were pretty hard to miss since one was the size of a peach and the other a grapefruit. They took a sample from the smaller one so they could biopsy it. We had no clue what was going on because I was at the top half of Carmen behind the barrier. I can imagine the surprise they must’ve felt seeing those 2 large masses. But to keep us calm, they didn’t say anything until the end of the procedure. Still the conversation was very low key and casual as if this is routine.

The rest of the day was routine. Baby crying, diapers changed, and naps in between. Objectively speaking and not as her dad, she was a very cute baby as were Olivia and Ella. Our biggest concern up to this point was her name! Our friends were asking (some were demanding) to know her name. What’s in a name? A purpose perhaps? Or a sign of things to come or things we’ll need?

July 28,2012
Still no name.

July 29, 2012
Normal morning. Her OBGYN comes to check up on Carmen and to give tidings of news. By the way, we’d chosen Audrey as her name which means “noble strength”. This strength we would need shortly. Not 5 seconds pass by when I get the sense that something’s not quite right. I’m not the best poker player, but this face I could read. I began to get really nervous as she asks Carmen a few routine questions post surgery. I almost blurt out, “what’s on your mind doc?”. At this point we had completed forgotten about the 2 cysts because it was downplayed so much during the C-section. Then she finally gives us the news. Malignant cancer with signet ring cell features most likely metastasized. The reason they’re called Signet ring cells is because uUnder a microscope these cells resemble signet rings, which are rings that kings used to wear to seal documents with. Stunned is the correct word to describe us at that moment. Again, reading her face the news wasn’t just bad, it was horrible. There was no light at the end of the tunnel, no “I’ve seen this type of cancer before and it’s easily treatable”, etc. It was plain and simple, “I’m sorry”, but “I’m sorry” in a very defeated way as if she was telling us through her body and facial language that this is REALLY bad.

The sadness that filled the room when she left was overwhelming. Not many words were exchanged except a few. “It’s going to be alright”. Not much else could be said. It was too early and we didn’t know enough but the reality and the magnitude of this news was tangible.

Due to the nature of our circumstance, the age of Carmen, and the fact that she just had a baby made Kaiser work in overdrive to get her the tests she needed to continue the diagnosis. She was given priority for a CT scan and an upper endoscopy all within 2 days. The signet ring feature is very rare so the OBGYN had to go to her textbooks to research it. This type of cell is mostly common with gastric (stomach) cancers so they hypothesized that it most likely came from the stomach. Indeed the CT scan showed a rather large tumor in her upper stomach just as they had surmised and an endoscopy (with biopsy) confirmed the hypothesis. The conclusion was that it started in her stomach and metastasized to her ovaries. This apparently is a route that was studied by a doctor name Krukenberg many decades ago. Hence she had Krukenberg tumors in her belly along with a 4cm one in her stomach.

Oh by the way, we have a new baby that we’re ignoring right now. What should’ve been a joyous occasion became not so much. It was hard.