It Took the Cake!

Yesterday I spent the day in as close to a catatonic day that I ever want to experience. I would much rather never ever experience it again. From the time I awoke to the time I closed my eyes for the last time, I was in tears. Not the running down your face tears, but the sobbing so loudly at times that someone would come to see how I was doing.

I didn't want to admit it at first, but one of the reasons for the breakdown was likely due to the change of medication. On Thursday, my doctor and I agreed that I would cut down on not only the steroid (one pill in total to 1/2 pill) but the morphine, too (2 pills in total to 1 pill in total). After some discussion with my mom and dad, we agreed it was probably too much for me and I likely was going thru some sort of withdrawal.

Mom is also not convinced that I took the correct dosages in the morning. That could well be. Regardless, I was a gigantic mess for most of the day. Crying because I was an emotional mess, crying because my neck and leg hurt, crying because I couldn't get comfortable, crying because everyone was worried about me, crying, crying, crying.

We decided to go back to the dosage of medication that I was on and see what happens. So far so good. I'm still feeling a little odd, but the pain is gone (hip hip!) and I haven't dropped a single tear today. On the plus side, around 9pm, Brie came to my room which was at first strange since I thought she left several hours before then for a party at Janae's.

Turned out Patrick had to work overtime and she had been waiting all this time in the car for him. I felt so badly for her...and him. He must be so tired. At any rate, I was still have trouble processing everything in my brain, but I was able to fake my way through it all. I suggested that we do something to pass the time and help her relax. She surprisingly agreed so she helped straighten my room and put together a shopping list for Target.

In what could be called divine intervention, he texted her, just as we were finishing up the shopping list. By this time, it was almost 10pm. I was pretty tired, but happy that she was happier than she was when she first walked in. As a reward, she brought me in a little late night snack...a yummy yummy cupcake from Max's birthday party!

I must say, it took the cake!!

So Brave

Cycle 13, Day 2 - For reasons unknown to me, as I sat down to journal today, it became important to document the cycle and day of my chemo treatment. The month is also officially half-way over. The year began with much trepidation and after days like Tuesday, it's no wonder.

As I was driving home from shopping this evening, I was giving much thought about the future and plans and I realized that I really have no choice, but to live by God's words to live from day to day and not worry about the future. There are moments when the future scares me more than anyone can know. Can I walk this path? Can I deal with what possibly is ahead? And then I do the only thing I can do, let it go, because I don't know what's ahead and I just pray that God would take me as I sleep. But not today and not tomorrow. Not this year.

I've been struggling a lot the last week. Though I smile and pretend that everything is okay, I grow weary of this "new" normal. I hate every step I take, my head perpetually pointed downward, unable to look anyone in the eyes from a standing position, shuffling my hunched body in such a way that people look pitifully at me or pitifully away. I long…hurt…wish…pray…for the days when walking from my car to the office, or wherever my destination, was done without a thought.

I've been asking God to help me find that place of thankfulness where my mind is in sync with the outward show that I display to convince my co-workers, family and strangers that I'm okay. I'm such a faker. Today's devotional verse helped a lot.

"Do not be discouraged, for the Lord, your God, will be with you wherever you go." Joshua 1:9

I thought of these words as I began my hated walk from the car to the lab this morning, silently cursing the nitwits who thought it was a good idea to put as much distance between the two by needlessly separating them with empty space and not one, but two water fountains.

These thoughts do me no good, but the truth is, they are there. But today as I finally arrived at the entrance to the medical office, I realized I had made the walk in less pain than previous weeks and I had not needed to stop to catch my breath. Never mind, that I must have looked a like a horrible sight because a lovely couple stopped to ask me if I needed them to get me a wheelchair. I smiled and thanked them for the kind offer. I am always thankful for the kindness of strangers. I am learning that there are many, many kind strangers in this world still.

At the Lab, the blood draw was incredibly painless. I didn't feel the needle slip into my vein at all. I complimented the technician, thanking her for being so good at her job. She simply responded, "You are so brave". I am? Her response made me want to cry. No, not really. Not this past week. I've been an insolent baby. Not as I sat in the lab chair, where I look away each time my blood is about to be drawn, refusing to look at the needle poking into my skin because if I look, I might have to run away. I was not brave on Tuesday, as I drove home, fear taunting me the whole ride home.

No I am not brave, I'm just doing what I need to do to survive, but it was sweet of her for telling me that I am anyway.

Jan 5 - Five Years Ago

On this day in the year 2009, my life changed forever. A routine doctor's appointment that began with a mammogram ended with a visit to the radiology department where a ultrasound was performed after which I drove home with a fear unlike any I had ever had before. Thus began my journey of living with cancer.

Prior to that day, I had not been to the doctor for over ten years. I had not had a cold, a flu or any other malady necessitating a trip to the doctor's. Then in late October, early November, back pain began to plagued me. At first I thought it was due to the VW bug I bought in September. A two-door car, low to the ground was causing me to twist and turn in ways I didn't need to with my RAV-4, I reasoned. It made sense, at first, to me and my family.

But then even walking became hard, my right leg dragging in a way it never had before. Still, I kept waiting for the morning that I would wake up and pop out of bed like normal. As Christmas approached, Brie began to tell me that I needed to see a doctor. After spending Christmas day at my brother's in which getting up from the couch was hard to do, I finally agreed and scheduled my appointment. I agreed to get the mammogram first since I had not had one…ever. My appointment day was set for 3:30pm, Monday, January 5, 2009.

As the hour that I would need to leave work for my appointment approached, calls and emails came in waves and I gave serious thought about rescheduling the appointment. Knowing me, however, I felt it was now or never so I drove to the medical center at my prescribed time and as I turned into the parking lot, I took one more call from a co-worker.  We discussed an issue that seemed important at the time for a few minutes. Finally I had to apologize, telling him I had to go because I had a doctor's appointment. My stomach was knotting up for some reason and I just wanted to get inside and get the appointment over with so I could get on with my life.

The mammogram started off routinely. I was sent to a little waiting room, given a gown to change into, and a hospital bag in which to put the clothes I was instructed to take off. One woman sat in the waiting room ahead of me, her name called shortly after I sat down and a short time later, she returned, looking no worse for wear. A few minutes later, it was my name was called.

I stood in front of the machine, following the technician's instructions as she adjusted the machine. She would then go to another room take the pictures, come back and do the same thing, but other breast. After which, I was told I could leave. I think I made it back to the little waiting room when the technician came back telling me that they wanted to take a few more pictures.

This time the machine was merciless, pressing hard against my breast until I thought they would surely pop like a balloon. Another technician appeared and through the glass window, I could see the two of them talking, then one would come out, make an adjustment and go back for another picture, each adjustment grew more excruciating and by the time they were finished, I was unable to hold back my tears. The technician was kind, talking to me in a gentle, soothing voice, apologizing each time for the pain she knew she was about to inflict.

As I walked back to the waiting room for a second time, I was told to change back to my clothes, but to wait for final instructions. I gingerly put my bra and top on, my wounded body already aching. I was shivering with fear as I obediently sat on a chair, waiting for the unknown. The technician came out and kindly, but in a no-nonsense voice, told me that there was concern and I needed to go to another facility for an ultra-sound…now.

I walked numbly to my car and drove to the other facility, on top of my fear, I was hungry, having worked through lunch. Less than an hour after leaving one medical center, I was at another, waiting to check into the radiology department. This waiting room was filled with patients. Time crawled. Fear and hunger alternately took turns taunting me. My cellphone would ring in steady intervals, my dear sister calling to find out how my doctor appointment went. I didn't answer for fear of crying. I didn't  know what to tell her. This would likely turn out to be nothing and I didn't want her to worry needlessly.

Finally, my name was called. I was given another gown, again with instructions to take off all my clothes waist up. This time, I went into a little dark room where I was to lay in a narrow hospital like bed. Like the mammogram technician, the ultrasound technician was kind and gentle, but my body, having already been assaulted, didn't want to take much more. As she gently pushed and prodded my breast with her little hand-held device, I flinched and stiffened throughout the process.

Finally, after I thought I could take no more, it was over. Thoughts scrambled throughout my head. I was told that I should get a call within a week with the results. I resolved that I would say nothing to my family until then. There wasn't anything anyone could do anyway. As I made my way back to the parking structure, my phone rang again. It was Eliz, again. I paused for a moment as I debated whether to take the call. My finger decided for me, pressing the answer button.

Finding Peace

I wish I could say that there weren't times when I feel fear rising over me, threatening to take me under into depths that I don't want to go. I cling to the Word, my hope and my promise as tight as I can, but there are moments when it's hard. Today is one of those days.

The steroid I've been taking has helped. A. Lot. It was initially prescribed for me to take two tablets for five days, once in the morning and once in the evening. It's been an elixir. With it I've been able to forego the Hydrocodone and use Tylenol instead for the little extra aches and pains. Starting yesterday, I was supposed to go down to one tablet in the morning. By 10pm, I could hardly walk. Brie had to come and rescue me, helping me get from the kitchen table to my recliner.

As I sat in shuddering pain, Brie brought me another dose of steroid followed by a chaser of Hydrocodone. I wanted two, but settled for one. I didn't get up again until between 1am and 2am. It's unnerving knowing that without the steroid, I can barely stand. If the episode was designed to scare me, it more than did its job.

The fear carried into the morning. My cellphone remains planted by my side as I pray for the call from the Neurosurgeon to come. In the meantime, I pray that I don't allow the fear to overwhelm. I will be strong in the Lord. He will be my strength. In Him, I shall find peace


Thankful for:

1. Brie's loving and willing assistance yesterday
2. Cellphones by my side, just in case
3. The ability to put my feet on the floor this morning
4. A job where I can work from home
5. Knowing that I can give all this to God
6. Last minute face-timing with Max and Rori
7. A cool Autumn day
8. A decent night's sleep even after all the went on
9. Food in the house
10. Steroids and pain meds

Last Day, Last Cycle

They walked out of the center, smiles bursting from their faces, calling goodbye to everyone they passed. I felt blessed to be a witness to the scene. I was so happy for her, I could cry. I won't lie, I wish it were me. I would have been walking on clouds, too.

I thought back to the first time I saw them. We crossed paths three times that day. First in the waiting room, then in the examination room and finally in the infusion center. They had the appointment before me. As a result, I sat in my room much longer than normal, Dr. Liang coming in a rush apologizing for being so late. A first consult, he explained, the couple had a lot of questions.

I remembered my first consult. Mom, dad, and Barbara came with me.  We asked a lot of questions. After a while, Dr. Yee kept looking anxiously at his watch and tried graciously to wrap it up. That's when we learned that the allotted time for the doctor visit was a mere twenty minutes. Not enough for a first time visit when fear is just as bad as the cancer itself and the only thing you want is answers to your questions, all 10,000 of them.

Later, in the infusion center, the couple was brought to the chair next to me. Even if I hadn't seen them in the examination room ahead of me, I would have suspected from the way they walked to the chair that they were first-timers. It's always the tentative, unsure walk and the look on the faces that gives it away. As she sat in the chair, I was touched by his attentiveness to her. It was obvious he took his job watching over her very seriously.

During the accessing of one's port or other procedures, the nurses draw the curtains closed as part of their process. When the procedure is finished, they always ask if you want curtains open or closed. Most patients opt for open. Perhaps there is some comfort in knowing you are not alone, perhaps its the community we feel with each other, whatever the reason, most opt to have the curtain open. They opted to have it closed.

That was six months ago. I would see them every now and then and we would smile in encouragement at one another as most of us always do, their curtains no longer kept drawn throughout the entire infusion. He still as attentive, she, brave and courageous, even though the chemo while doing its job was wiping her out.

Today, I was seating at infusion chair 18. It's in a cozy little nook in the center, just one chair to the left, no one to the right of me. Within moments, Tammy was there getting me prepped for my meds. Shortly thereafter, they were being shown to seat 19. We smiled at each other, saying "hello" as they settled in.

The gentleman, no longer a novice, wandered around as they waited for Tammy to tend to his wife, saying hello to the nurses, asking questions. His energy level was high. As I had not sat close to them since the first time, I wasn't aware that he was so gregarious. She, too, was all smiles. He kept talking excitedly to the nurse, asking questions about other nurses, such as last names, writing them down on a piece of paper as she recited them off.

He ran off in search of someone, when his wife called out to me, "Hi Neighbor". I smiled over at her, "hi neighbor!" And for the first time, we began to talk. That's when I learned, she was on her last day of her last cycle. I remember that December day, three years ago, when I sat there, both smiling and crying that it was finally over. My smile grew. We talked a bit more and then Brie came bringing my lunch and I smiled even more.

Her husband came back and they told me that they were writing Kaiser to let them know how wonderful the nurses, angels they called them, were throughout this whole time. Yes, absolutely, without a doubt, they make a big difference in the place. Professional, but kind, understanding, gentle and caring.

As I was finishing my meal, her infusion was finished. Her time, for now, hopefully forever, at the infusion center had come to an end. They walked out together, stronger, more seemingly in love. It was a beautiful thing to be a witness too. I shall never forget.

As they passed by me, the woman and I smiled at one other. "I wish you luck", she said to me. "I wish you well", I replied back. I hope I never see her in the infusion center again.

And So It Begins Again

My first day back in the infusion center for a new round of chemo. What I remember about the first time...

1. Being so frightening and hating every moment of the whole experience
2. Feeling like I had to be strong so mom would know that I was okay
3. Realizing that it's the nurses who really know the score and it helps to have them as a friend (after all they're the ones with the needles)
4. Fearing the uncertainty, would I get sick, when would I lose my hair, was this going to be worth it

I went home and cried, feeling depressed for the whole week. I did not want to go back and it wasn't until I realized that I didn't have to go back if I really didn't want, that I began to feel better. I was in more control than I thought I was. I came to realize that it's one of the things I hate the most about the whole ordeal, feeling the loss of control.

This time around, I didn't have that deer in the headlights look. Even though I didn't know if I was going to have an adverse reaction, the fear was gone. Yes, I may feel fatigue, but if I'm lucky I'll be able to embrace the life I have and live it with hope, love and joy. That's what I plan to do. 

The chemo had a strange sensation as it flowed into my veins. The nurse had warned me that Gemzar could burn and that we may need to slow the drip down and pump more saline into me at the same time. At first everything was okay, but after about 10 minutes, I ended up asking her to slow the drip down. While it was never painful, it was just an unpleasant feeling. 

I'm so thankful that I had the presence of mind to ask my doctor about getting a port. It's getting harder and harder for the nurses to find a good vein and with chemo it's imperative that there is a good stick so the chemical doesn't leak out. 

I find it interesting to watch other patients at the infusion center. Some come alone like me, some have a relative or friend at their side, some are obviously tired and weak, some seem to have more energy, some have that deer in the headlight look (newbies), some obviously know the drill. Most are positive, most have hope and I see a lot of beauty in them. I often silently pray for the ones in my proximity as I know that prayer helps so much. I wish I could take more pictures there, but I don't want to intrude or make others feel uncomfortable.

Afterwards, Brie and I went to Starbucks and came home to start putting Christmas away. There is a part of me sad to see it go and another part happy to leave the clutter. 

What Will Be

Almost four years ago, a new journey began for me. Sufficed to say, it's not a trip I would have chosen to take. But like everything in life, good comes with the bad and, thankfully, there have been a lot of blessings.

After over 6-months of chemo, I was given a reprieve in December 2009 and was told that it was likely that I would be able to be off the poison for up to a year. It's been three years and this Thursday, I begin a new regiment of chemo. This time around, I asked for a port so I won't need to be stuck with a needle 6 times a month.

To say that it's not the way I wanted to start the year is an understatement. I've not really been looking forward to 2013 as I have no idea what it may bring. Truth is, I really don't want to think ahead. Still, it helps to make plans for the future.

Things I want to do:
1. Select my one word that will be my word for the year. It was a difficult selection. Joy, love, hope, faith, journey, persevere, fight, act, serve and believe were in the running, but none of these truly struck a chord in me. As I was driving to Greg's today, embrace seemed to embody all that I want 2013 to be.
2. Participate in 365 where I purposefully take at lease one photo a day representing something special in the day.
3. Participate in 52 weeks of me in which I take a self-portrait.
4. Buy a polaroid. Learn to use it
5. Buy 620 film and shoot with my dad's old Argus 75.
6. Write, every day. Write with purpose and meaning. Write a book.
7. Travel. Drive up North for a week and if possible, across the country.

Those are just a few of the things I want to do this year. The good news is that I'm back to feeling like making plans, like doing things which is part of the reason I selected embrace as my word for the year. I want to embrace my loved ones, embrace life, embrace the things that I feel passionate about, embrace things that come my way, even if they are unexpected, embrace the purpose that God has determined my life to be.

It was easy to do today, surrounded by family and friends, armed with my camera, filled with the Spirit of the Lord. It was a good day, a start of a good year. Unexpected, but good. I am so blessed, so very blessed. I pray that this will be a good year from start to finish. I pray that I get to finish it and celebrate another Christmas and another New Year.

A Thankful Hate

I hate that I know the ins and outs of this place.

I hate that I know where the best place to park depending on the time of day I'm here.

I hate that I know where the laboratory, oncology, nuclear medicine and orthopedic departments are located and that I wander the halls without a wide eyed look anymore.

But I am thankful for this experience. I am thankful for the strength that God has given me. I am thankful for the love of my friends and family.