The Power of a Smile

Today, in all of its ordinariness, is one of the best days of my life. The lower your lows, the more amazing the average days seem. Mom is finally responding to the IV antibiotics, and seems almost back to her old self. Her speech delays are nearly gone, her short term memory is improving and her confusion and hallucinations have evaporated. She may be released as early as tomorrow to a rehab facility to help her regain her strength, and hopefully even start walking again. As it turns out, when she suddenly took a turn for the worse two weeks ago, it was due to the sepsis. It wasn't her brain cancer, or a side effect of the chemotherapy like we feared. All along, Mom was just fighting off a life-threatening infection that had invaded her bloodstream.
 
The seizure she had on Saturday morning probably saved her life. It caused her to get the medical care she needed right away.
 
And what amazing medical care it is. I cannot speak highly enough of the UC Irvine Medical Center staff. From the time we checked her out against medical advice of a horrible county facility in Moreno Valley and brought her to the emergency room here in August of 2013, she has had the highest standard of care. Mom has an amazing team of doctors, nurses, residents, attending physicians and social workers that I cannot say enough good things about. Her neuro-oncologist, Dr. Carrillo, calls us back within minutes when paged, even if it's on a Friday night or before dawn on a Saturday morning. He takes the time to meet with us and is one of the most compassionate doctors that has ever walked the earth.

But you do not need to be in one of the traditional helping professions to truly make a difference in someone's life. There's one bright smile that comes to my mind when we're on our way to an appointment, and it belongs to Sunida.
 

Sunida, the face of UCI Medical

Sunida works in valet services at the Chao Family Comprehensive Cancer Center. But she provides a much more valuable service than that; she brightens our day. When we started coming here just over a year ago, we were frightened and scared. We dreaded our appointments. She was one of the first people we built a relationship with, as she quickly learned all of our names. She started asking my Dad 'Where is your pretty daughter?' when I wasn't there, or would tell me 'Your Dad makes me laugh!' when I would bring Mom. She always greets us with the biggest smile, and when she asks Mom how she's feeling, you can tell she genuinely wants to hear an answer. When she's not there, I have to say I'm a bit disappointed.

Many times, I come straight from work to Mom's appointments. I often drive there, my stomach in knots, knowing we will be receiving the results of a scan. Or, worried how the new chemo. she is about to receive will affect her. Appointments with the doctor can be unpredictable, but seeing Sunida is not, because she always puts us at ease. Without realizing it, I started looking forward to seeing Sunida.

A few days ago, my Dad was returning to stay the night with Mom and walked by valet services after he parked their car. Realizing that Mom wasn't with him, Sunida asked where she was. Dad filled her in, and without skipping a beat, she asked what Mom's room number was.

Today, as I was about to take the elevator to the neuroscience step-down unit on the 5th floor, I heard my name. There she was, huge smile as always, with flowers in hand for Mom.

Mom was so surprised, because seeing her was out of context. It took her a second to realize that she was there to see her, and that she brought her flowers. Carnations were Mom's wedding flower. Even now, a few hours later, Mom is still talking about what a sweet gesture it was to care enough to take the time to bring her flowers and a card. But it was also all of the days leading up to this, and all of the days that will follow.

You cannot put a value on what she has given us over the last year. No matter what happens, Sunida will always be someone who makes me smile when I think about her. At the end of this fight, we will hold in our hearts all of those who have led this charge with us. Including Sunida who always adds a little brightness to our day no matter how gloomy they may seem.
 

 

 

 
 
 
 
 

Hope + Hopelessness

Yesterday was the most difficult day of my life, but today is proving to be stiff competition. I'm writing this from Mom's bedside in the neuroscience stepdown unit, where she is heavily sedated following her MRI. We are waiting to see her doctor. Wondering if she will come home. I do not want to spend time and energy describing or documenting what has transpired since Mom had her seizure yesterday at 5:30 am. It has been a horrific 30+ hours, and I'm going on little sleep. I'm hoping that, in time, I will forget some of the details and committing them to paper/computer won't help.

There is nothing worse in this world than the hopeless you feel watching someone you love so deeply suffer. The only thing amidst all of this that brings me a brief respite (besides Nathan, Trevi and looking forward to the routine of going back to work) is the hope that I will soon be pregnant. I pray that this round of IVF, which I officially started today, will work.

A few things are different this time around. For one, I am on 20 units of Lupron injections for a straight two weeks. Before, I was only on them for three days. Lupron plays an important role in the down regulation of your cycle. In conjunction with the birth control pills, it helps shut off the body's normal process of hormone and egg development. This way, when I begin the stimulation drugs, there will be more of a response. Like how a dry sponge soaks up more water than a damp one.

The cost is also dramatically different. The first round cost $17,000. This clinical trial was $3,500 plus $550 in medication, which I was very excited to pick up Friday. I picked up Lupron, my trigger shot and my estrogen, which I will be on for two weeks once the embryos are transfered. The study medications are actually free, and I receive them at me next appointment on the 28th. That's also when I when I will find out if I am in the study group (AFOLIA) or the control group (Gonal-F).

On my first round of IVF, I did not know that different doctors have different protocols. It makes sense that they would, and helps explain why different clinics and doctors have success rates that vary wildly. The previous clinic I went to had a success rate of 17% for my age group. This clinic is actually at 50% for the same age group.

I was also fearful of the needles first time around. With my eyes tightly shut, I sat at our dining room table for about 20 minutes; my hands sweating and trembling. I was slowly pressing it to my skin, but not hard enough to make any progress, drawing out what should have been quick and (relatively) painless process. This time, I gave myself the shot like a champ. As soon as I woke up in Mom's hospital room and remembered it was go day, I was almost excited. I took out the medication out of my overnight bag, cleaned my skin with the alcohol wipe, filled the syringe and stuck it in with a dart like motion, just as the how-to videos describe.

With everything my family is going through, I am thankful to have something this positive to look forward to. Hopefully, a final difference between this round and the last is that this is the one that works.

Rising Up & Settling In

I Finished this blog post late on Friday night. On Saturday morning at 5:30 am, Dad knocked on our bedroom door and told us to call 911. Mom was having a seizure. Here at the emergency room now. She is responsive and seems like herself right now. Alarmingly, she did not right after on the stretcher on our doorstep. She's getting a brain CT and other tests now and we should be able to see her again soon.

This week has been full of ups and downs. A few short days ago, we hit the lowest point since Mom's diagnosis. And then Thursday, we somehow caught a warm current and are now rising back up.

Mom spent the majority of Monday in bed, asleep. On Tuesday, she had a rough morning, so Nathan and I went to her appointment with Dr. Carrillo while she rested at home. Instead of administering her intrathecal chemotherapy, which we had already decided to skip, he met with us. He was very generous with his time, and spent about 45 minutes discussing Mom's condition. He agreed that she should not have either chemo while she is this weak, and somewhat hesitantly admitted that her new symptoms could be caused by the chemo administered directly to her spinal fluid through the port in her head. There is no hint deceptiveness in his uncertainty. Rather, I think it is hard for anyone, no matter their training or expertise, to really pinpoint why she has had such a dramatic decline in her mobility. There are just too many variables.

When we returned home, Mom was awake; a good sign. She remained awake the majority of the afternoon, while she watched a KCET special on Italy (Rome! Venice!) and I tried to tidy and unpack. Their boxes have filled the garage, and are spilling out into the dining room. Because she has lost her taste, appetite and ability to keep food down, I tried very hard to offer her something small to eat every hour.

I would be grateful if I had a husband who was okay with Mom moving in. Instead, I have a husband who suggested it, and I will never forget that. It is amazing waking up and knowing she is just across the hall, and that this priceless gift is possible because of him. As I was trying to get her to eat every hour, I realized there is no way I would be able to offer this level of support and care if she didn't live here. And as making this situation possible makes me love him even more, he told me he is falling more in love with me because he sees me nurturing and caring for her. Other guys would be inconvenienced, annoyed, or jealous of the time I'm spending with her. Instead, he finds it attractive.

After our tidying and  tv watching, I took her out to the patio in the backyard where all of her potted plants are and she held the hose to water them. She could tell the screens were dirty and gave them a good spray, and then watched while Nathan took them off and I windexed the windows. It wasn't high tea on the Queen Mary, but it was an activity we were able to do together, and she enjoyed feeling the sun on her back. She also started her physical therapy. Someone came to our home and had her do several exercises such as standing up from a seated position and, while holding on to the piano, briefly lifting one leg, and then the other.

On Wednesday, she had her gamma knife surgery (fifth time!) and it was a success. After getting the metal frame attached to her head, and an additional MRI she was "only" in the machine for 1 1/2 hours. She had some confusion, which is new, and asked me how work was even though I had been with her the entire time. We had the appetite stimulation prescription filled, and thankfully, she did start eating a little more.

Each day she was a little better, but Thursday brought the most improvement. It was around 5pm and my Dad was getting ready to go back over to their apartment to clean and move more items out. Mom announced I want to walk. Nathan, who has an alter ego named Hans that helps Mom walk, said Okay - where do you want to go? To the car, across the street! And across the street she went. We steadied her, and her steps were very small, but she did it! I  left to take my Cat Isis to my friend's in Hollywood with a smile on my face almost the whole way. I called his Mom, excited to share the good news.

And that brings us to today. With those big gains yesterday, I was hoping for more. But, we always want more. More time, more dinners out, more vacations, more money, more...stuff. But this disease is teaching me that it isn't always about more. Yesterday, I was reminded that you can have just as good a time with simple pleasures and activities. Like helping Mom shower. We had a laugh when she asked me why I wasn't taking a picture, to post on facebook. When I retold Nate later, he exclaimed Mama DeWitt's back! and she smiled and pumped her fist in the air. I need to remember how she was just days ago and be thankful for the small improvements she's had, that she is now living with me, and that my husband not only loves her, but he loves me that more for loving her.

Occam's Razor

When you're going through a tough time, waking up is the worst, especially in the middle of the night. You have a few precious seconds before it all comes flooding back, and then you remember what you have to get up and face.

I didn't sleep well last night, and woke up several times even though I had a sleep debt from the yard sale this weekend. When I woke up, I worried, and started thinking of all of the what ifs. I got out of bed after about 6 1/2 hours and was so surprised and happy to see Mom awake, sitting up in bed. Dad had given her the morning medication, and she had her coffee beside her and the news on. As tough as everything is right now, waking up with her across the hall from me is a real gift. Things seemed alright.

I noticed a missed call from UC Irvine Medical center, and a message from her neurosurgeon's nurse asking me to call and have her paged. I called her at 9am, and she asked if we lived close and said to come in at 9:30am. I was prepared for the worst. I think we all were.

Before we left, I decided to walk Mom around the block with Trevi. You have to grab those good moments when you have the opportunity. Plus, its good practice for Trevi to get used to walking with a stroller, right? Navigating both of them proved harder than it seemed and when I was a street over, I was relieved to hear  Dad's footsteps behind me, as he took over holding Trevi's leash. Even so, doing this made us 5 minutes late for Mom's appointment.

Those five minutes seemed increasingly insignificant as we waited a half hour, then an hour, then a whole two hours. The four of us filled the tiny office and Nathan and my Dad had a nice banter about solar energy, non-profits and hikers, while I wrapped my arms and a few hospital blankets around Mom's shoulders. Again, she started nodding off.

Her neurosurgeon Dr. Linskey finally came in with news that none of us were expecting: Mom's lesions are small, treatable, and he wants to give her the gamma knife this Wednesday morning. The machine will be on hiatus for three weeks starting Thursday, while they replace the cobalt, so it's important we get her in. He said she has always responded well, and considered one of his "star" patients, with frequent-flyer miles.

It felt like a huge weight was lifted off my chest. My husband and I left after the good news, as Dad was planning to take her home as we had an errand to run. But as quickly as my smile almost appeared, it dissipated when Dad returned and explained that she threw up on the way home. And then she fell asleep again in her chair at 1pm.

At 4:30 a home healthcare company nurse came to conduct an evaluation and hopefully order some equipment to make the house more safe and comfortable for mom. Including, hopefully, a hospital bed. She said that mom's weakness is, in part, due to her inability to keep anything down. But that does not explain her loss of coordination, balance and immobility. Mom faded in and out of sleep while she was here.

Around 7pm, I helped her into bed, and changed her clothes because she did not have the energy for a shower. We laid down on her bed, and put on a murder-mystery. But she was out within about 5 minutes. As I lay there, something hit me, and I sure hope I'm right: Maybe the intrathecal chemo that she receives through a port in her head is causing the sudden onset of symptoms.

I called in Nathan, and then Dad to run this Occam's razor by them. When did her symptoms start? A few days before San Diego. What did we have done before San Diego? Her intrathecal chemo. We held off on the chemo in her thorax, because we wanted her to be able to enjoy the trip. But instead, she got a whole lot worse.

Further evidence to support my theory: Her neuro-oncologist, Dr. Carrillo, told us Friday that these symptoms seem brain-related, not related to the chemo in her thorax. It's been 3-4 weeks since she's had that, and if that was the cause, they should have subsided. He thought it was due to the new lesions. But then today, we meet with Dr. Linskey, her neurosurgeon. He said that her lesions are not causing these symptoms.

Also: Nathan reminded me that Stanford said there is no "real" proof that she even has cancer cells in her spinal fluid! All of her tests have come back inconclusive. Even UCI admits that it is their best guess based on how she is presenting clinically.

Tomorrow, Mom is scheduled for blood work at 9:30am, followed by intrathecal chemo at 10:30. We are going to talk with Dr. Carrillo, but are 99% certain we are going to take a break from this chemo as well to see what happens. Mom was walking two weeks ago. If she could regain some of that mobility and quality of life I would be elated. I was much more upbeat on my nightly walk with Nathan, which we just got back from. Our time was a little faster because there were no breaks due to my crying. This new hope is small, but it's something. I have a feeling I will sleep much more soundly tonight.

Cancer: The Worst Monster

When you're a kid on the lookout for monsters, everything is okay as long as the lights are on and you keep watch. If you're vigilant, they won't appear. But the second you look away or turn off the lights, you are sure they will be there.

Right now, as an adult, the worst monster I can imagine is cancer. And I let down my guard.

No sooner had I updated that all was well on the one year anniversary of Mom's cancer diagnosis, than she took a turn for the worse. In one short week, she has been relegated to a wheelchair. She has more than lost her strength: she's lost her coordination. Taking baby steps and even stepping on-to, or off-of a curb is dangerous. She has lost her taste in food, is sleeping more and more each day, experiencing some confusion, and becomes nauseous or throws up without much warning, even with her anti-nausea medication. She is also starting to have more pain.

But some things have not changed: her positive, sweet demeanor, sense of humor, and nurturing generosity. For example, yesterday, on their 45th wedding anniversary, we held a yard sale with all of her household items. Mom insists on dividing it equally between herself, me and my brother.

If you think Mom has spent one second complaining, then you don't know Mamma DeWitt, as my husband lovingly calls her, very well. You see, this decrease in physical abilities has coincided with her Dream Foundation wish being granted, and I guess you can't enjoy being around the animals at the San Diego Safari Park if you're complaining, even if you have lost your mobility. Once again, her positive outlook on our trip even in light of everything she endures astounds me. How many people frequently get in a bad mood over smaller, more insignificant things?

I would like to, in fact planned on, this posting being about all of the good moments we shared on that trip. But will need to do that in a future posting. Things seem to be rapidly changing daily and I feel the need to update in real time rather than revisiting last week. Mom's MRI scan on Friday showed 4 new brain metastases and a 5th one previously treated increased in size.

Before the scan, I had hoped these new symptoms could be attributed to something else. Of course her cancer cannot be cured, but I had hoped the side-effects could subside. Maybe she had some swelling steroids could reduce. Maybe it was the effects of the chemo and the break would help. Her strength would come back, along with everything else and we could go back to how things were over this past year. Instead, I learned these new symptoms are the result of her brain cancer. And while the gamma knife has been an option all year, Dr. Carrillo said we are reaching critical mass. A time when they will not do gamma knife on her, because there are too many and it is in the folds. In the fluid of her spine. He said he would not know if it would be this time or the next.

I am absolutely terrified. When the idea was proposed that Mom and Dad would move in, I imagined us cooking together. Sorting through boxes of old photographs. Watching movies. Me pushing her around the block in the wheelchair at sunset. But what I imagined and hoped for is quickly slipping through my fingers. Just last Thursday, I was alarmed that she slept from 4pm until 8am. Today, she feel asleep in the chair shortly after my friend Kay brought us food, around 1pm.

Around 5pm when she woke up, I thought we would put on a movie like we did last night when we watched Don't Look in the Basement, a b horror film she watched when she was pregnant with me. But she was only awake for about a half an hour, as we transferred her from the living room to her new bedroom across from ours.

But what a half hour it was! We had all worked very hard while she was asleep - especially my Dad, brother and Nathan - moving all of her bedroom over here. She was so happy with the big reveal of her room, complete with the rose bush we were going to plant outside her window, but instead stacked on top of a bunch of paving stones so she could see it while sitting. As she lay next to me, she rubbed my arm and my legs and then quickly fell asleep. I rubbed her back, and stayed for awhile before coming out into the living room and bawling in front of my Dad and my husband.

In my last posting, I quite honestly wrote that I could not remember the last time I cried over this. Now, it is daily, at the drop of a hat in moments I can steal when she's not looking. And as I fall asleep.

My husband and I went on our three mile walk under the bright moon and he talked to me about fullness of life, and how all of our experiences - good and bad, add to that spectrum. He helped me reframe some things, including the fact that she is only 63. He said she has had a fuller life than some people who are 83 when they die, and he's right. More about that conversation in a future posting as well. While the walk and conversation made me feel better, better is a relative term. We still had to stop twice so he could hold me as I cried.

Right now, I don't know if we will be able to go on our trip to Catalina that my friends gave her for her birthday. It breaks my heart, but thank God for this past year, and the adventures we have had. A year in which somehow, I was able to not worry and anticipate all of this. Not being hyper-vigilant brought me a new normal and allowed me to make the very most of that time. I need to try, as best as I can, to keep that up. But this is an adjustment period, as was the time following her diagnosis.

I think I will be able to do it, because I know darn well she would be able to. She always put her family first, no matter what hardship she was enduring at the moment. And she would do it effortlessly. With a smile, and without complaining. Plus, what fun is life if you're always looking on the look-out for monsters? More good times lay ahead, even if they are different than what I would like.