Mother’s Day is always hard but the girls have adjusted as best as they could so far.
Audrey especially has grown fast. Can’t believe she’s gonna be 4 this July. Oliva will be 10 in July and Ella 8 in October.
Mother’s Day is always hard but the girls have adjusted as best as they could so far.
Audrey especially has grown fast. Can’t believe she’s gonna be 4 this July. Oliva will be 10 in July and Ella 8 in October.
When I first met Carmen almost 19 years ago, I thought to myself, wow that girl is pretty. She was stunningly beautiful. She was so pretty I thought to myself, don’t even think about it, you’ve got no chance. Little did I know, she was severely blinded by love (God’s handy work) and so she gave me a chance. To this day I’m not quite sure why she went out with me as I’m sure there were many guys after her. But I wasn’t going to complain or question it. As I got to know her better, I began to realize that she had the spunk, energy, uniqueness, and the personality to match her exterior appearance. In other words, I had hit The Jackpot. Inward beauty that matched her outer beauty. I had it all in one person. I realized looking at our wedding photos, that I became the guy that other people would say (including me), how in the world is she with him? Yes, I became that guy, the envy of the block and I was very proud of it. A friend recently asked me why my eyes looked so swollen in some of the pictures. He asked if I was crying that she said ‘yes’ to me. Probably. I could never get over how beautiful she was. At the same time she was so humble about it. Whenever I would tell her that, she would insinuate that I was insulting her and making fun of her. But I believe deep inside she enjoyed hearing it as much as I enjoyed telling her.
Carmen and I dated for about 6 years and married for 12 ½ years. As with any couple, we had a few rough patches in the beginning. In my immaturity I thought myself blameless in our struggles, but looking back now, we were both so young and naïve about how things worked in life. I just didn’t understand her enough in the beginning to help myself from fighting with her. However, I can say that each year was better than the prior as we really got to know each other. I don’t feel we really had to “work” on our marriage. It just came naturally for both of us because we enjoyed each other’s company so much. The arrival of our girls just made things that much more special for us. I loved the fact that she wanted to quit her job and stay home with our girls. Nothing gave her more joy than raising them, and nothing gave me more joy than watching her with our girls. If the feeling of the word perfection can be defined, it was what I felt every night when the girls were in bed and our house was at peace.
As with everything else, all good things must come to an end. Her stint with cancer ended on December 18, 2013. The second her pain ended as she breathed her last, mine began. People say words cannot describe the pain and they’re right. Words cannot describe it fully. However, as I thought about how I’m going to write this post to honor her and plainly because she wanted me to, I realized there is one word that comes close. That word is “half”. Everything feels like half now. Jokes are half as fun, sports are half as interesting, and the house feels half empty even though she was 1 of 5. The person that coined the term “better half” to describe their spouse probably lost theirs. Carmen was my (much) better half. I just hope time will be kind to me and my girls and accelerate the healing process.
Carmen and I were so appreciative of all those people that invested so much of their time, emotion, effort, and prayers especially in the final few weeks. She was so amazingly strong and fought ‘til the very end for me and the girls. I truly admired her strength, courage, and determination. She will be missed more than she will ever know.
In golf, a hole in one didn’t “really” happen unless there’s a witness that can attest to its occurrence. Well, I have a witness in Han that this story really did happen exactly the way I’m describing it here…
Carmen and I were lying in bed one night. I was massaging her feet and legs as I did every night for the past many weeks, when Ella gingerly walks in to our room singing. For those that don’t know Ella, she is pretty eccentric even at this early age. She is excellent at doing jig saw puzzles, is very meticulous and detail oriented, and very anal about many things. Her OCD is developing nicely and probably at the same pace as her mom’s OCD when she was Ella’s age (I digress). She also has this thing about singing and having songs playing in her head. She is always singing or humming something. Carmen and I joke saying Ella has a jukebox in her head. On that particular night, Ella walks in singing a song that she made up. It had 2 lines that she kept repeating. The song was “Mami’s gonna feel better in 10 days. Mami’s gonna heal”. I usually don’t pay attention to her songs because many times it’s just humming or some other unintelligible words that obviously make sense in her head. This one however, immediately caught my attention. Maybe because of its specificity, or maybe the words came out very clearly. Either way, I lay there thinking to myself, “no, it can’t be…Could God really be talking through my children?” But, I said, why not. So I marked that day, 11/13 Wednesday, and added 10 days to it. 11/23 would be the day that Ella’s song predicted Mami would feel better.
I began to wonder about this. Was she gradually going to get better? Or would it be a step up improvement? To contain myself, I kept a very light touch on it. Did I really believe her song? A very small percentage of me was hoping to believe, if that makes any sense. So no, I probably didn’t, but I left it in the back of my mind, just in case. The next day, Thursday was no better. Friday was slightly worse than Thursday. Saturday was an awful day. We got official bad news about her condition, which by definition made things “official”. Our families came over as they consoled us. Sunday was no different. This part of the story now begins to overlap with the ER-Round 3 post. Sunday night is when Rosana sleeps over and Carmen has the seizure early the next morning rushing her to the ER for the 3rd time. By this point, way deep in the back of my mind I thought to myself, how in the world is she going to feel better by 11/23?
Day 7 of Ella’s countdown looked bleak. She wasn’t able to relieve her constipation and was in much pain and discomfort. That night I had a conversation with Han. I thought to myself, why not, I’ll tell him the story of Ella’s song. I’ll amuse myself. So I told him. Upon hearing my story, I think he believed it immediately, well at least more than me. So we sat and hoped for the best for Carmen.
It was that same day or the next that he began to tell me something about a date mistake/typo I made on a mass email I had sent out, and that the date was for that coming Friday, 11/22/13. I couldn’t recall sending out any emails lately, so we were both scratching our heads. I then realized he was referring to the prior email updates I had put up in the blog. I had put 3 of them and dated all of them. The 3rd one had a wrong date. Instead of 11/22/12, I mistakenly put 11/22/13. Only the meticulous, detail oriented and nitpicky Han would’ve been able to pick that one out. I believe there was a reason I told him of Ella’s song, because in the 3rd email that had the wrong date, I mention Ella having her 4th birthday which happens to fall on 10/10. The date (typo) of the email was to be 2 days away from my conversation with Han, which happened to be the date of the crucial surgery that would finally give Carmen the much needed relief. The impression I got when I re-read that email was “Ella” and the number “10”, which made me think back to Ella’s song where she mentions 10 days. I felt it was reaffirmation of Ella’s song.
Han had no doubt that by day 10 Carmen would feel better no matter how the colonoscopy would turn out (it failed). So on day 9 (11/22/13), Carmen had her surgery. After the surgery she was in lots of pain, but the majority of that pain was from surgery and not the constant pressure that had been building in her bowels. By that evening, she was up on her bed, eating and chatting away with her friends that had visited. The next day, Day 10, she was feeling much better!
So now I hold a sliver of hope that the 2nd line of her song will also come true. I figured, if the first line, as improbable as it seemed from day 1 to day 9 (with each day getting progressively worse than the prior day) came true, why not the 2nd line?
ER – Round 3
Following the 2nd ER trip we decided it was time to take another cat scan to see if there were any tumors in her hips that could be remedied with radiation. She had been complaining about pain in her hips for a while now and that pain was just getting worse. The result of the scan was negative for bony tumor (which was a good sign because it wasn’t in her bones), but it did show lots of tumor growth in her belly cavity. Wasn’t really a surprise since she hasn’t been on any type of treatment for about 6 weeks.
The week prior to the 3rd ER trip was excruciating. Carmen and I had very difficult talks as her prognosis per the scan was very bleak. In short, she didn’t have much time. It’s very painful for me to even right this much, so I’ll leave it at that.
Her only time out of bed was to go to the bathroom. Half of those trips were to throw up anything and everything. Sometimes the vomiting episodes were so intense, that a sip of water would trigger it. To say it was unbearable to watch doesn’t do any justice. Once again, I won’t go into detail as I don’t feel like reliving it, even in small glimpses.
Carmen asks me to ask her sister Rosana to sleep over on Sunday. Rosana was supposed to come over on Monday to tend to Carmen and Audrey, but for some reason she asked her to spend the night. So Sunday night everything is “normal” at home. The kids are in bed and we all go to sleep. Since Carmen is hooked up to the TPN bag, she has to go to the bathroom many times during the night. Each time, she gets up and sits at the side of the bed and rests her head on my chest as she leans over. Every part of her body is hurting. At 5am she is sitting at the side of the bed resting as she prepares to lie down. She usually holds on to the IV lines to prevent them from tangling and pulling, so this time was no different. I was sitting right next to her when all of a sudden she pulls the lines backwards. I figured she wanted to untangle the line, so I make sure all the blankets were pulled back from the lines. However, she didn’t stop pulling back. I asked her what she was doing, but her face didn’t respond to me and she kept on pulling back. Then her whole body began to seize. Within a few seconds I realized she was having a seizure. I had never experienced this before and certainly wasn’t expecting it. The terror and simultaneous despair cannot be described so I won’t even try. I began screaming Rosana’s name. Poor girl, her terror must have been far worse than mine because she was sleeping. At least I was fully awake when it happened. She came running up and probably had the same look on her face that I did. I had yelled her name about 5 times, each time louder and louder. The most amazing thing in all of this so far was that none of my girls woke up! Or if they did, but were too scared to come out of their rooms. Audrey however, didn’t wake up for sure.
I yell to Rosana to call 911. As we were on the phone with the dispatcher, Carmen began to calm down. The entire episode lasted about 2 minutes. When it finally stopped, she had a wide gaze about her. My face must’ve looked like I had seen actual zombies gnawing at my feet. Carmen calmly looks at me and with a sincere bewilderment asks “what?” I was just happy to have her back.
So off we went to the ER. These trips to the ER were getting old. I was certainly getting tired so I can’t imagine how Carmen is feeling or dealing with all of this trauma. I must say she is so strong mentally and physically to endure all this and still have the wits about her that she has. Truly remarkable.
Tests were conducted to see why she seized. They did a brain CT to rule out any tumors, lesions, or hemorrhaging that might have caused it. Then they ran blood tests to check for imbalances in electrolytes and other levels that might have caused it. The brain ct results came back and it was negative. Thank God. Brain was clean. The blood test results showed a severely low sodium level. Normally this alone at that level wouldn’t have caused a normal healthy person to seize, but in Carmen’s weakened state, it triggered the seizure. The blood work also showed her kidneys were at 15% function, meaning they were on the verge of failing. I’m not sure if kidneys can come back to normal function once they failed. So at Brian’s recommendation, we saw a kidney specialist, Dr. Tsang. He had another cat scan ordered of her abdomen to see why her kidneys were swelling and to see if there’s anything we could do about it. The scan showed that the ureter was dilated, which means they were being pressed from the outside thereby, decreasing the flow from the kidney to the bladder. This was on both kidneys causing both to swell and struggle. The recommendation was to put in stents in both ureters to open up the passageway. This involved no cutting and would take less than 30 minutes. Sounded like a no-brainer.
On Tuesday the procedure for the stents was scheduled. Within a day after the stents were put in, her kidney function improved dramatically. In just 2 days, they were back to normal! So on to the next hurdle which was severe constipation. We had to deal with this before we left the hospital so after giving her a few hours to recover from the kidney procedure we loaded her up with all kinds of laxatives, stool softeners, and stimulants to get her bowels moving again. After much effort, nothing moved. At this point we were silently fearing the worst, a blockage. So on Thursday we decided to find out how bad it was by doing a colonoscopy. We were all hoping it was a stool blockage, but instead it turned out to be a full blockage of her colons. By this time all the stool from the prior 2 weeks were stuck in her bowels unable to pass through causing her immeasurable discomfort and pain. To a point that nothing was able to relieve it. Her belly was severely distended due excess gas, fluids, and solids. There was only one option left, which with her condition was very risky. We didn’t have a choice. Do the procedure or count down to the final days. No matter how high the risk was, the risk of not doing anything was 100%. So once again, a no-brainer decision was made to bypass the colon. This surgery had to succeed because its failure would’ve meant disaster for Carmen. Amazingly as we sat there on Thursday night distraught with our heads spinning, wondering when she could do this surgery, the surgeon comes to our room (Dr. Solomon) and gives us the option. I deferred to Carmen and told her it was her choice. She had been through so much, that it wasn’t fair that I make this decision for her. So I left it 100% up to her to decide. Thankfully she agreed. Oh, the amazing part was that the surgery could take place the next day, Friday morning. I honestly don’t think she would’ve made it past the weekend had she not had this surgery.
As one can imagine, Thursday night was extremely long and painful for her. Thankfully the surgery was scheduled for the morning. I asked the doctor to be extremely aggressive, because like I said, failure meant one thing, and one thing only. So there was no higher risk in my opinion. The doctor said he’d try his best, but if he thought it would do her more harm than good, he would pull out and abort the surgery. That meant that I better not see him 15-20 minutes after the surgery begins. So as we waited in the waiting room, the 30-45 minute mark passes, which to me was an excellent sign that he was proceeding with the surgery. But then, an hour passed, then 75 min, then 90, until after 2 hours the nurse comes out to give us news. She says a few words that I completely ignore because they weren’t the words I was waiting for. Then finally in the midst of all the jumbled up words coming out of her mouth, I hear the word “success”. That’s all I needed to hear. My heart was now able to rest. This immediate storm had passed. After 5 grueling days in the hospital, there was some light at the end of the tunnel. We could breathe once again at least for a few hours or days, until the next hurdle. There was no time to celebrate, but we did give ourselves a few days to unwind. The big elephant was still in the room and we needed to find a way to slow or better yet, stop it.
The next few days were set aside for recovery and pain management. We finally got discharged on Wednesday after 10 days. I was there for so long, that I had to go back to work. So in the mornings, I would take a shower in the hospital room, change into my regular clothes, and with laptop bag swung over my shoulder, I went to work saying by to the nurses. It almost felt like I was in a business trip going to and from the hotel room.
Carmen went through so much during these past few weeks. It truly amazes me how strong and resilient she is. Her mental will is as tough as anyone I know.
Though it seems like we’re losing at times, the battle continues.
The days following the first ER visit were not any better than before. Her pain and nausea were a constant thorn on her side. She wasn’t really able to eat much or drink either causing her weakness to intensify. With all the IV fluids that she received during the brief hospital stay, her ascites got much worse. I had scheduled a paracentesis for the following Thursday (because that was the earliest they could schedule her in), but seeing her swollen belly, I didn’t think she would be able to wait even the weekend. So after conferring with Gene and Brian, the safest thing to do was to get her in through the ER so they could watch her, stabilize her, and admit her so she could get treated. Hence, another trip to the ER in 2 weeks.
Brian once again made sure Carmen was expedited through the process because her condition demanded fast action. We also needed to address her nutritional state. Since she wasn’t able to eat, it only made sense to hook her up to a TPN bag to provide temporary sustenance through an IV. TPN is basically a backup system in case a patient isn’t able to eat for a long period of time. Carmen was obviously a candidate for this. So they inserted a PICC line again. This time it would be to provide much needed nutrition, not chemo. They also tapped her belly to pull out fluids that were trapped due to a combination of low protein levels and cancerous implants, both of which cause ascites. They pulled out a little over 2 liters of fluid. Outfitted with a picc line so we can administer TPN at home gave us a somewhat renewed sense of hope. It was just a matter of time I was hoping that she would snap out of this spell of nausea and pain and begin to eat again.
That was not to be.
We administered TPN at home for about 1 ½ weeks. Her only other intake by mouth was vitamin water and regular water. Not much food was going in. She was also having a hard time going to the bathroom due to, what we thought, was severe constipation. At the same time, since she wasn’t able to drink much, she wasn’t able to take any decent amount of laxatives. Her condition was deteriorating with each passing day. Needless to say it was very difficult to watch her decline like this. I so desperately wanted my old Carmen back.
Last week was very rough for her. It was supposed to be a good week since it was her off week from Xeloda. I was hoping and anticipating her return to “better” health during this week, but the pain and nausea persisted and would not relent. By this time she was not able to take Protocel due to vomiting. Her intake of food is minimal, weakening her even more. It is the vicious pain cycle that somehow needs to be broken. With pain, she needs to take pain killers (Percocet, Methadone, Fentanyl patch, Motrin, and some other things that may not be legal in certain states, but perfectly legal in the Chang household) in high doses. The side effects of this are nausea and constipation, further exacerbating her decreased appetite. With decreased intake of good food, her body takes much longer to heal itself leaving the pain unchallenged, thereby requiring the constant flow of pain medication which causes the cycle of side effects to perpetuate endlessly. The goal is to wean her off of these pain medications so her body can normalize itself once again and accelerate the healing process.
As I alluded to last time, we’ve decided to stop Protocel altogether. As a believer, I have to believe that Protocel has served its purpose in this fight. The reason? In Matthew 7:9-11 the Bible says “Which of you, if your son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!” We’ve been sincerely asking for guidance and wisdom and felt compelled to try Protocel. So it did serve a purpose. Just don’t know what that is at the moment. All things in due time. So we’ve moved on to other holistic treatments which I’ll explain at a later post.
The Great Adventure (aka being married to Carmen) continues
Getting back to last week, she was due to get her blood work for the upcoming cycle of Xeloda. She had been very weak and constantly nauseous and in pain. So on Wednesday I came home early to take her to Lab Corp to get her blood drawn. We needed to see if her blood counts were ok or if they were low. She was so lethargic and pale that I assumed they would be low. So after discussions with Gene and her oncologist, we decided to be on the safe side and take her in to the ER. That way she can get all her blood work done and get treated right away (i.e. transfusion) if she needed it. So I called Brian Gee and told him that I would be bringing her to Little Company in a few hours (Wednesday, 10/31). Brian was good enough to come meet us there to make sure we were taken care of.
The result of the blood work once again astonished me. It was all normal. How, in her weakened state with minimal nutrition and continual vomiting, could her kidney/liver function be ok, and all blood counts be normal? She certainly is an enigma and very resilient, which is what we desperately need her to be.
This hospital stay was very hollow for me. Usually when one goes to the hospital there is an expectation that they will get better when they leave. In our case, there is no such thing. A hospital stay is just stabilization and nothing more. The cause of it all is still there and does not change and there’s nothing they can give to make it go away. An infection can be treated at the hospital with strong antibiotics, so when you leave the hospital it’s all fixed. Not this. This fix is very far away and the journey is very difficult and painful.
Needless to say it takes a lot of effort to care for Carmen. When I leave for work someone needs to come and help Carmen and take care of Audrey. So for the past 2 months we’ve had a few people go completely out of their way to helping us out. Monday’s are reserved for Kate Bae, Carmen’s unni. She comes at 8am and stays to 2 or 5. Tuesday is my sister Jaycei, usually all day. Wednesday morning is Grace and/or Anna from church, and the afternoon is usually Sara. Thursday is my Junior High School friend Justine (she’s a cop!) whose flexible schedule allows her to spend the entire day. She spent Wednesday night at our place when Carmen and I were at the hospital overnight. Sarah from church and Anita have helped fill in gaps during the week as have others. Her childhood friend Miriam has taken sporadic days off of work to come and take a “shift”. So the week is usually fully covered with friends and my family. Jenny H for bringing goodies from Target, and Jenny Y for constantly praying and bringing her things to eat and try. Han for organizing the help that so many have chipped in for, and Gene for being the ever present adviser. Her youngest sister Ana for coming over on the weekends to entertain the girls so I can pester Audrey and nag Carmen all weekend long.
My parents have been coming over about 3-4 times a week after work driving from Cerritos with dinner so I can eat somewhat in peace as they watch Audrey, who’s become as bossy and demanding as her mom. My mom often times comes over from Cerritos, picks up Carmen and takes her to foot therapy in Buena Park, then drops her off, then goes home, which makes for very long days for her. This sacrifice has made them much closer. Since they own a flower shop they usually bring her flowers. The last time they went to foot therapy, they had a pretty cool moment when the doctor looked at Carmen and said the worst may be behind her. Both cried together. That time now seems like an eternity away seeing Carmen’s frailty right now.
In Due Time…
A quick note on these 3 words. I had written the above post on 11/5/13. I couldn’t understand the Protocel issue, but I left it with God and wrote “All things in due time.” The very next day, 11/6, I look at the daily verse in my Bible app and the verse is from 1 Peter 5:6 which reads
“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time.”
As usual against my wishes we went on an outing to a pumpkin patch. I have nothing against pumpkin patches, but I do have a problem if they are 50 minutes away when the one in Torrance (decent with a petting zoo) is much closer. We went to the one in Irvine, Tanaka Farms. It was nice, but isn’t a pumpkin the same in Irvine as Torrance? I’ll go out on a limb and venture to say that it’s the same even in Texas or Nevada, or anywhere else they sell pumpkins. The farm animals at the petting zoos are probably the same as well, smelly, stinky, aggressive, and overall unpleasant. Why we had to go to Irvine, I don’t know. But we did. Actually the longest part of this adventure was just getting out of the house. It took us over an hour just to get all 4 bodies in the car to leave (must be a female thing), 50 minutes to get there, 45 minutes actually enjoying the place (because we got there so late), then 50 minutes back. Carmen actually did quite well. She had enough energy for that brief outing. The problem comes the following day. In her weak state it takes literally a few DAYS to recover.
The girls certainly enjoyed the day, which in Carmen’s eyes makes the pain and exhaustion worthwhile.
At this time Carmen is on her first cycle of Xeloda since her 5 month break from chemo. That definitely added to the fatigue and nausea. We’re not sure how the Xeloda is affecting the cancer right now. Due to her weakened state it seems it’s not really doing much to halt the progression. However, it’s still early to make any kind of determination either way. So for now, it’s a waiting game. I’m having my doubts with Protocel as well. At 4 ½ months (if it was working) we should be seeing some good results. The fact that we’re not makes me wonder if it’s not working. Can we afford to stay on this for another few months? Debating, but seems unlikely.