Ten Reminders of My Cheerleaders

It's been a busy week in this household. After chemo this past Friday the three of us went to Kelowna and we got to hang out with my family at a dance recital, church, celebrating four birthdays & having a lazy start to the week. It was also good to see my family's church and my brother-in-law's family and to be able to thank them for praying for me. Meeting family & complete strangers who are praying for me has been a big encouragement and is very humbling.

Matias has had a busy week too. He's cut his first two teeth & now has a cold. It has certainly been good to have my parents here because it would have been very difficult to take care of my fussy boy today without them. I hope he has a more restful sleep tonight.

And then there's me. Chemo last Friday. A great weekend with family. A CT and my bone strengthening infusion yesterday. And now I'm waiting to see how the side effects will be while fighting off a sore throat and trying not to get my boy's cold (so far I'm just tired and a little achy). Tomorrow will be my recouping day. Friday will be my 16th dose of chemo. And next week I will find out the results of my CT (and if the last eight weeks of chemo have been worthwhile). What a crazy roller coaster this is.

To bring me joy this week I have ten memories of my family (and in particular, my niece). Monday morning, I started my week with a chai latte, my nephew's birthday, and a request from my niece... "Do you want me to paint your nails?" I had a dilemma. Should I let an almost 8 year old paint my nails? And if so, which was the most neutral color?

The picture below shows the results of our efforts: she painted my nails and I painted hers. And now I have ten finger nails which remind me of my little cheerleader and my many other cheerleaders around the world. Gotta love the color & sparkle!

Last Friday's Chemo Adventures

Have you ever laughed so hard you got into trouble for making too much noise? Or have you ever forced yourself to stay awake because you were enjoying yourself so much and you really didn't want to miss out? Or have you ever instantaneously bonded with compete strangers so quickly that within minutes you were making jokes at each other's expense and truly laughing about it?

Each of these was true for me for my chemo this past Friday. Like rooms in a hospital ward, the chemo room is divided up into pods. Most pods consist of four chairs facing inward at each corner of the square. In addition there are four not as comfy stacking chairs for support people which sit next to the patient chairs. Two nursing computer stations sit on opposite sides of the square and a sink is on the third side. The fourth side is the open walkway.

When I arrived, there was a lady around my mom's age sitting to my right. Her husband came in with tea and a snack for his wife. I enjoyed hearing their accents and guessed they were from the UK. 

My nurse started asking the typical questions and I was touched by her empathy when she expressed that one of my symptoms must be concerning to me. My nurse was boisterous and overflowing with bubbliness and her heartfelt words were greatly appreciated. My IV was inserted and I first got my steroid.

A conversation was started with the older couple... just light bantering about tangled IV lines from dancing with IV poles on the way to the bathroom. Or that his wife thought her husband wouldl be old when he turns 70 (not too far off). This couple had been married as long as my parents (45 years) and it brought me joy to see them walking through this reoccurrence of cancer together (and it made me hope that I get to go through a reoccurrence of cancer after 45 years with my husband). We shared our cancer diagnosis stories how long we've been at treatment. The topic then turned to hair and when she was thinking she'd be able to get her first haircut.

After my steroid finished, my Benadryl and Zantac got started. The nurse brought in a third patient and her sister. They have had our nurse before and as the bantering begins, the volume of their conversation increased. 

The older couple and I got in on some of the humor. We talked about yanking the call bell out of the wall to get quicker service when our IV beeps. And joked if we should disconnect our IVs tubing at our hands rather than taking the whole IV pole contraption with us to the bathroom. Then our nurse ate chocolate in front of us and we guiledt her into giving us some as well.

Through this all, my large dose Benadryl was making my mind foggy and my words difficult to get out but I forced myself to stay awake. Our conversations turned to sadder topics about our cancer as well. We freely talked about some of the the nastier side effects and which ones we were ok with... and we showed each other the peach fuzz we call hair on our heads and our excitement of it growing (For me, showing my bald head is a sign of my comfort level with a person. It shows I'm trusting them with something I feel vulnerable about. And it is comforting to see the unique beauty in each of the bald heads.).

The first couple finished treatment and left.The joking continued... this time another lady across the way joined us and expressed her desire to "move into our pod." A second older couple joined us. The nurse started her assessment conversation as the rest of us continued to make noise. Just as my infusion was finishing, my husband and boy joined us. I got to show off my boy a little and after my IV was taken out, we said "see you later." Each of the other ladies were having their own chemo Fridays and I'll more than likely be seeing them in another one, two, three or four weeks depending upon what their chemo schedules were. It might have been just another Friday for many of you, but this was an especially memorable chemo Friday for me full of laughter, staying awake, & making friends (all because of cancer).

I'm not sure how today will go. I'm at the hospital and have another hour to wait to see if I get my chemo. The morning's thoughts have been on a lost set of keys, a sick & fussy baby, an even sicker grandma, and me with just a stuffy nose. The distraction is good. I've had my CT this week and am waiting until Tuesday for the results. It is hard to keep my mind still while waiting so I'll take the distraction. Looking forward to chemo this afternoon & hoping to have as good a weekend as last weekend.

I Get to be Auntie Krista

Today I get to be Auntie Krista (and a very proud Auntie Krista at that!). I get to sit in a crowd and watch my nephew play soccer and my nieces dance. And then tomorrow we get to celebrate not only all three nieces' and nephew's birthdays but also my brother-in-law's. What a weekend!

This weekend I'm Auntie Krista... not Krista the patient -- who is asked to spell her last name and state her birthday before any bloodwork is done, any medicine is given, and even before the inevitable question that opens every chemo session as to how my week has been (which invariably turns to talking about my apetite, mouth sores, pain, neuropathies and bowel movements... I feel decades too young to be talking about my bowel movements -- or poop as I call it -- in such a manner).

Meanwhile back at the home front, I got my full dose of chemo yesterday (just barely). I guess it really doesn't matter if it's just barely or sky high, a full dose is a full dose... so who cares! I am happily thinking about my cancer cells dividing and trying to conquer my body but not knowing that only through cell division will my chemo have the opportunity to kill and destroy my cancer cells. What joyous thoughts... and to think that this is actually happening in my body as I'm writing this... yeah!

That's right... the light is back in Krista's life (or maybe it's just the steroids and a little adrenaline from getting out of my house and spending time with my family). Whatever the case, it's good to feel more light in my life. 

My mom reminded me again yesterday how much she hurts when I'm hurting. My dark days were very difficult for her. So I say to my mom and all of you who hurt with me, thank you. I'm doing better than last week. I'm expecting that I will have some more dark days and lots of light ones. Walk with me in those dark places and grieve with me. And on the light days, let's celebrate and enjoy life! 

(And today is a day that Auntie Krista is celebrating and I'm refusing to talk about my poop).

Some Darker Days

This past weekend has been tough for me. Physically, I'm doing fine (other than my new side effect of finger nails that feel tender like they've been slammed in a door).  My liver enzymes continue to improve and some are even going back into normal ranges. A CT scan next week will show what's going on inside.

Emotionally, I've been very tired. Sleep hasn't been restful lately for any of us lately and I'm sure that has contributed to my sadness. Things have just felt dark. I've held my boy a little closer and have asked for more hugs from my husband... but the darkness hasn't been letting up easily.

I'm not sure if it's because some people I know who have breast cancer are moving forward with treatment -- moving on to surgery, radiation, etc. It feels strange to be jealous of someone else getting surgery & radiation. And maybe it's because I've had 14 treatments of chemotherapy and I have another 10 to go. Well, I hope I have another ten anyway because that means the chemo is working and I'll be able to get rid of as much cancer as possible.

In some ways it feels like I've just barely started treatment and in other ways it feels like I've been at this forever.  The only thing that I can compare it to is like being a new mom... you feed baby, change baby's diaper, try and get baby to sleep and then get everything else done before the three hours are up and the whole cycle starts again.  I feel like I'm doing the same thing week after week and while I'm getting somewhere (hopefully), I'm stuck in this cycle.

It feels dark & I'm not wanting to just skim over these hard emotions or dark places. I'm wanting to face them and work through them and come through it on the other side so that I can be a better wife, mother, daughter, sister, friend, etc. Though right now may not be the best time or place to do that, I'm wanting to get away and work through some of what's going on inside of me.

There have been some lighter moments this weekend as well... a visit from friends with lots of joy, a message on my answering machine, an unexpected email, arms wrapped around me while praying, planting flowers, and a steak dinner.  I also have things that I'm really looking forward to... getting away for the weekend to visit my family, my nieces' dance recital and a birthday party for my sister's entire family (minus my sister). It's a little bit of normalcy.

Can you please pray for me... for continued healing of my body (specifically my liver & spine) and that the chemo would continue to be working, for my husband and son as they carry heavy burdens, to find time to go to the dark places, for some sunshine in the darker days, and to enjoy every moment of light.

I Can't Do It

For most of my life, I've followed the principle of the little engine that could... "I think I can, I think I can." My parents have instilled in me the belief that if I set my mind to something, I could accomplish it. And when someone tells me I can't, I don't like that very much... and I do my best to prove them wrong. 

An example of this would be when a friend of my dad's was showing us his very cool GPS watch that he used while training for a race in Hong Kong. "Dad, do you think I could run a marathon?" His answer of "no" came a little to quickly for my liking. "So if I did run a marathon, would you get me a GPS watch?"  He answered just as quickly with a "yes" this time. Ugh... what was I thinking!??!?! Me... run a marathon? What a silly idea and stupid thing to suggest... how am I doing to get out of this one? "So dad... if I ran a half marathon, would you get me GPS watch?" He still answered "yes."

That conversation began a two year journey of "training" and running both a half marathon and a full marathon... not because I had a good cause for which to run or I wanted to get in better shape or even because I enjoyed running... I ran simply to prove my dad wrong. And my stubbornness, which in this case I called determination, got me through every step of the 13.1 and 26.2 miles. Even though I learned many good lessons through the training and running of those races, I still fondly remember it as probably one of the dumbest things I've ever done.

This week I've been sitting at home filling out even more disability paperwork... I've already filled out some for the government, some for the insurance company, some for my workplace... and I'm trying to prove that I can't do it... not now anyway. I have cancer... and it's palliative... and no I haven't considered a date when I'm going to return to work. It is so strange that while I'm doing all that I can to live as long as I possible, I'm also writing down as many reasons as I can think of to prove why I can't go back to work. 

When it comes down to it, I haven't lost hope or a positive attitude and I still have cancer... and I don't want to go back to work... not now anyway.

Owies

Owies

Our boy has been crawling for a while and this past week has decided that he no longer wants to be lying down... he wants to be upright (at least sitting) and or standing. To him a pillow to block an exit is an obstacle to learn how to go over.  :) It has been so fun to watch him learn.  He's pulling himself up to standing on anything that he can grip.

So we've been on alert for a few more falls and bumps as he gets up. One thing which has been slightly entertaining is that he's learned how to stand up in his crib.  So the crib has been lowered (again) and there has been more than one time that we've found him desperately crying. He's gotten up and he's been standing for a while but he hasn't learned how to sit down... so instead he cries.

Also because of the way he crawls (a combination between an army crawl and crawling like a worm) and the fact that he's now scooting so much, he has rubbed off the skin on his big toe! So my little boy got his first bandaid.

I am thoroughly enjoying this stage of his development. He's growing and changing and learning every day (or at least it seems that way). Sometimes I feel like this is how I grow in my faith -- growth spurts of learning. Over the last few months I've been learning about dependence and sustenance.

For the first few weeks, I was forced to depend on others for almost everything. I learned to say yes when help was offered -- and help moved in and took care of my family's needs, help made meals, help drove me to appointments, help prayed.  If you know me even a little, you'll know that I can be quite an independent and stubborn person. Forced dependence has been humbling. And now that I'm physically getting stronger, I'm learning how to continue to accept help in ways that I'm needing it... but at the same time, I'm wanting to encourage myself to do more things so that I can get stronger. It's a strange and fluctuating balance. Some days I can do more and some days I can't... and both I and the poor people around me are trying to figure out which day it is! And I'm trying to learn to clearly communicate my needs (of the day) as a person, wife, mother, daughter, friend, etc.

Sustenance is the other big thing that I've been learning. It's learning what feeds my body and soul and will help it not only get enough nourishment to maintain but also grow. One of the things this means is getting back to my new normal in terms of growing personally and serving others. Over the last number of weeks, I've been able to pick up my Bible again and try to listen what He is saying to me. The other part of sustenance is being fed by others. I cannot begin to express how I have felt that I have been sustained and uplifted by so many. Whether it be through an email, card, or phone call or the gift of a home cooked meal or an offer of help to clean my house or walk my dog or even an offer that I have not taken you up on (yet), I have been blessed by you. But I truly believe that the biggest gift I have been given by you is prayer. I have trouble putting into words how your prayers have affected me. I feel overwhelmingly loved by many, a peace in my heart, energy to get me through the day, a joyful and thankful spirit, etc.  Some days I feel like a broken and crumpled mess curled up in the fetal position and lacking in all ways. Through your prayers, God is giving me the strength to get to my feet and stand tall. With an overflowing heart, I'm learning to face the day with each of its joys and challenges and truly live life with purpose to its fullest.   

As I'm going through this growth spurt, I'm having some of my own falls and bumps and bruises as I'm learning to walk in Him in a new way. God, help me today to thrive and grow in You as your precious and loved daughter. Thank you for teaching and blessing me through those around me. I am completely dependent upon You and sustained by Your strength.

Reflections of a Nurse

It's Nurses' Week this week... so I thought it might be appropriate to share some reflections of a nurse.

Thirteen years ago I became a registered nurse. I had just started working at Children's Hospital on the surgical and burn unit. I loved what I was doing (and was finally getting paid to do it). I'd always wanted to become a missionary nurse and was getting some experience so that I could go and do that. A couple months prior to my graduation I'd heard about a trip going to Kosovo. I had no clue where Kosovo was but I'd signed up for the trip and was going. I was fresh out of university and going to save the world! Little did I know how nursing and my trip to Kosovo would shape my life (but that is a story for another day).

A lot has changed since starting my nursing career. I've had the privilege of serving as a nurse on four continents. I've been a nurse in a little village in the middle of the Sahara Desert and a pediatric intensive care unit in a large city. I've primarily worked with kids and their families and have worked on almost every inpatient unit at Children's Hospital. While I've worked as a bedside nurse for most of my career, I've also been a school nurse and an informatics nurse. I've experienced the joys of working alongside some pretty amazing families. (Most days) I love being a nurse!

I've also had some difficult and ugly experiences. I think of the mom whose baby died during childbirth. I think of the girl who battled anorexia and her family who struggled alongside her. I think of two couples who so faithfully & lovingly cared for their sons with severe disabilities and harsh prognoses. I think of the infant who had old fractures lying alone in the crib cringing at being cuddled or touched. I've come home from the hospital broken, in tears, and completely devastated by what I've seen, heard, and felt.

Nurses carry a heavy responsibility & precious burden... and nurses aren't only taking care of others' loved ones in vulnerable situations. There was the nurse whose mother was ill and lived far away... the nurse who struggled to support her family while her husband was in between jobs... the nurse who was taking her mom to chemo... the nurse who was going through a rough divorce... the nurse who found out she was unexpectedly pregnant... the nurse who had been given a life changing diagnosis... the nurse who had spent hours in the ER with their own child... the nurse who had a near death experience... and the list goes on and on.

So the next time you meet up with a nurse, ask them how they're doing... and truly mean it. Find out something about them. Ask them what they love about their job. Compliment them on something you value that they've done or been to you. Impact their lives by praying for them. Write them a note of thanks. Love on them.

To all of the nurses in my life -- to my friends & family, to the colleagues that I've worked with past and present around the world, to the ones who helped me get to my cancer diagnosis and the ones who are helping me live a longer life with my cancer -- thank you for what you do. Thank you for making an impact in the lives of so many people each day. You will never know all of the amazing things you do to make life a little (or a lot) better for those around you. I am truly blessed to have you in my life. Happy Nurses' Week!

Things I'm Missing or Grieving

Yesterday I finished my twelfth dose (or third cycle) of chemo. Oh does that feel good! My sister and I had a friendly bet on what my neutrophil count was going to be. She was right. Now we have to figure out what she won... :-) It is good that she was correct.

Through this process there are many things that I've had to give up both now and in the future. These are just some of the things I'm missing or grieving:

- the smell of shampoo/hair product (I admit that I occasionally use shampoo even though I don't need it just for the smell of my shampoo... and the other day the lady taking my blood blushed when I complimented her on the smell of her hair product)
- choosing when I would stop breastfeeding (the choice was made for me with my diagnosis; it was very sudden and even though Matias transitioned easily, it was very hard to give up)
- being able to plan in advance (I know the days on which chemo and other appointments are planned weeks in advance but I have no clue how I'll be feeling that day or if the plan will change... which makes planning things in between appointments very difficult)
- maternity leave (I'm currently on mat. leave... a time for a mom and her baby to enjoy each other and move into their new roles. Getting used to being a first time mom is a big enough change... some days I'd really just like to enjoy being a wife and mom without thinking about cancer)
- the constant awareness of needing to be careful of getting sick (although a hug or a handshake from a person who is ill probably won't set me back too far right now, it can certainly takes it's toll on me)
- my pre-baby body (it's not as easy to get back to where I was pre-baby and pre-chemo... I'm not sure if I'm going to want or need a few extra poundo down the road... and if I don't want them, they're going to be hard to get rid of)
- not having the need to be continually poked (oh the good old days when I had a hard time remembering when I had my last bloodwork/IV/test)
- sleep (between a baby, crazy steroids that keep me up, chemo that is just tiring, and thoughts that make getting back to sleep difficult, I miss feeling rested)
- my curly hair (without being vain, I've always really liked my curls... more than once this week I've seen my reflection in the mirror and the reality of my hairless head has brought me to tears)
- having another baby (we'd always wanted more than one child but it doesn't seem that it will be possible... I'm so thankful for the gift of the precious son we have)


And on a positive note:
What I Have Survived Since Feb 12
(in 31 Appointments)

IVs (successful) x 18
IVs (unsuccessful) x 4
Bloodwork x 18
Biopsies x 12 (I think)

Chemo x 12
Bone strengthening infusion x 3

MRI x 1
CT x 2
Ultrasound x1
Xray x2

Parking Ticket x almost one

Normal or Abnormal

Some days this household is relatively normal. Other days it's not. You can decide which was true for us on Tuesday.

 

Xhevat starts work very early so he is usually half way done his day by the time I stay awake for my day. I say "stay awake" because we're trying to get Matias to sleep through the night. He's fine without a bottle but he still is occasionally waking up through the night. On top of that, Matias and I are both fighting colds which makes it harder for  both of us to get through the night without waking. And then there's our dog... he loves to be a part of the action and has been known to whine when he isn't the center of attention or fully involved with what is going on. He is oblivious to the fact that his 90 lb frame may appear intimidating.

 

So this past Tuesday my happy, snotty nosed child awoke. I took him downstairs to offload him on the grandparents and couldn't help but enjoy watching the absurd interactions between the grandparents and their grandson... so I grabbed myself a coffee and decided to call it a start to my day.

 

A little later came a phone call from my sister. Since I have live-in childcare I could chat and not worry (too much) about what my son was doing. My dad, having been up for who knows how many hours, had taken the Beast out for a walk. Each day when they return he reports on how my dog behaved on the walk and anything they saw that was of interest. It was a nice day so JR went into the back yard after his walk.

 

Then came getting ready for the day. It was my bone strengthening infusion day. While I love its purpose, I don't appreciate the side effects. I ensured my "activity" bag was packed (non-essential things which require various levels of mental involvement to fill time depending upon my mental capabilities of that moment).

 

I then went through other checklists... Matias was fed and should be ready for his nap soon. His music, soother, and crib are ready. JR should be brought inside so that mom doesn't have to deal with him. I opened the back door and called his name. No JR. In the garage? No JR. Checked the back yard again... still no JR. Just as I was saying, "Dad, where did you put my dog?" I heard dad open the front door and saying, "How did you get here JR?" Yup, he got out the back gate and found his way to the front door of our house (a little more complicated being that our back yard has no direct access to our front door -- he must have gone down the back alley around at least half a dozen houses and come around to the front of our house). There was no time to think about my dog (although I did wish I had a "doggy-cam")... must get to my appointment on time.

 

I arrived a few minutes early for my appointment... and waited to get into the medical day unit and then waited even longer once I got in to start my infusion. It was a very busy day in the medical day unit but I got a gentle nurse who knows me. I've learned to appreciate how important continuity of care is from the patient's perspective. When my infusion started, I recognized that my parking would expire before my infusion finished (but I was attached to an IV pole and couldn't really move). Fortunately my chauffeur (aka Dad) also realized this and moved the car before a ticket was issued. Another friendly nurse made time in her busy day to give me a hug when she found out my diagnosis and reasons for getting the infusion -- much appreciated.

 

Dad and I returned home late. Xhevat had worked overtime and returned home late as well. Mom had prepared lunch for us.

 

While I was still feeling free from side effects, we got the crazy idea to go to the US for an outing. Down south we got some fuel and groceries, had dinner, and then dropped in on friends. Xhevat and I were exhausted and really pathetic guests. For a little pick me up, we had an ice cream cone just before the border and tried (and failed) to keep the boy awake while driving home. Another short border lineup and home at last.

 

We got home around 8 PM. Xhevat had been up for hours and I was starting to feel the effects of my infusion. After a few whimpers Matias was transferred into his crib and went back to sleep. The dog was fed and mom was kind enough to feed Matias his night feed. Xhevat and I crashed.

 

Just a little after 1 AM, we were awakened by some whimpers and then full on crying coming from Matias' room... and another day began.

 

This was just another day in our lives.  As abnormal as life feels right now, there are many parts of our days that may be just like yours. Some things (like chemo and other medical appointments) can be booked weeks in advance and other things (like exercise, shopping, and going out for coffee) are written in pencil and are dependent upon how I'm feeling that day or that moment. As a new mom or an oncology patient, all that we can do is take one day at a time and make the best of the day that is before us.