Disappointed

I got my CT results today. They weren't bad and they weren't great. I had hoped for great. I still only have one lesion on my brain but it has grown a bit... so it's not stable.

I've been offered to have more imaging and a referral to see if I'm a candidate for another type of radiation (which would also have its potential benefits and risks).

As my cancer is not stable (there's still some growing in my brain), I still can't drive. My doctor is so considerate and felt badly for having to say no. It is good to have compassionate people on my team.

I'm disappointed but I have to remember the big picture. Half of the people who have my diagnosis have already died. I still have a really good quality of life. The growth of my brain lesion was minimal. I'm doing well & my hope hasn't changed. 

I've actually had a pretty decent week. With God's help, I haven't spiralled downward in anticipation of getting these results. It's not the news that I wanted to receive but it's also not horrible. I'm thankful that there aren't more spots of cancer on my brain... but was really hoping and praying for less.

Taking Off the Stickers

I've known that fear would be sticking to my heart both this week and next week and I've been praying that it wouldn't take over my heart.

After our birthday & the six month mark, I've gone into a busy two weeks. Seven appointments that will culminate with a possible change to my driving status and/or another round of chemo. I'd love both.

On Monday when my throat first started hurting, I was concerned but knew there wasn't much I could do other than drinking fluids and getting some rest. Tuesday I was exhausted. I somehow managed to need five naps throughout the day (one is normal; five is crazy) and still slept 8+ hours at night. Fortunately Matias was having a relatively calm day yesterday and we both managed.

However when Xhevat got home from work, I was done. My headache got significantly worse, I had no appetite and I eventually threw up. Vomiting scared me more than anything. The last time I puked was when I was diagnosed with brain mets. Had my brain met(s) increased in size or number? Had I simply stretched or compressed some parts of my neck the day before? Or maybe it was just my cold symptoms? Was this the beginning of the end? Should I go to Emerg and see if there was something to do? Should I try and wait it out?

I just sat on the couch with tears streaming down my face.

I decided to speak with the oncologist on call (Yes, us cancer patients have a wonderful number we can call 24 hours of the day and we can talk with an oncologist who can answer questions. Thank you doctors, nurses, et al who work at all hours of the day).

The doctor and I talked through things and decided to wait a bit to see how things would continue. In the meantime he suggested some medication.

Because I wasn't sure how I'd be doing, I asked Xhevat if he'd stay with me today. I needed him for his emotional strength and support (Did I mention how thankful I am for him?).

Fortunately no symptoms got worse overnight and we continued on with the plan of getting spinal radiation today... so I should be feeling more back pain and discomfort and possibly have esophageal pain over the next few weeks... yeah! Oh the things we do to try and live comfortably longer!

And do you know what was the worst part of today?!?!! Taking those silly stickers off! All seven of them! And just to make it even worse, Xhevat peeled off the last one super slowly and made me say "I love you" so that he'd just pull it off quicker. I gladly (and quickly I might add) gave in and told him what he wanted to hear (Did I mention how thankful I am for him?).

I know that I'm struggling with fear right now. When triggers (like new symptoms or the unknown results of future scans) appear, I have to keep on reminding myself of the truth. My hope hasn't changed, nor has my God. The removal of stickers or fears are going to hurt... no matter how quickly or slowly they're removed. It's a process because there are always going to more stickers added. Whether they're removed quickly or slowly, there will eventually be an end to the pain and I will get rid of all of my stickers. Until then... with the help of others, I'll keep on getting rid of my stickers.

The sticker marks after they were oh so lovingly removed (the marks have nothing to do with radiation).

The Mark of the Cross

Today starts a busy two weeks for me. It started earlier today with a radiation planning session. By the end of next week I'll have had seven appointments ranging from radiation to a CT to bloodwork. My mind is already racing.

In my case, the radiation planning session is basically getting the best picture of the area where the cancer is causing pain/damage. With a few marks and more detailed picture, they can focus the zap of radiation in the right place. I had Xhevat mark a couple spots on my back that were more painful and then at today's appointment I got a few more marks. Fortunately, these marks were only made by markers and not tattoos. The clear, circular stickers are there to ensure the marks won't fade when I shower. I was told that I can't lose the center mark of the cross... how true, how true.

This is going to be a marathon of appointments for me and I'm starting it off with a sore throat & runny nose. Can you pray specifically for energy, endurance and an immune system to fight my cold and still get chemo next week? And that I'll never lose the mark of the cross.

A professional did this... not my toddler.

Celebrating My Expiry Date

I didn't know if I was going to see this birthday... but I'm here today and so grateful.

I'm thankful to be waking up this morning to the voices of my little boy & his daddy chatting and our dog following the action around having been renamed (by our son) George from JR. He's also still saying good night to one of our guests last night.

Half of the people that have my same diagnosis have died by six months. As of today, I'm very gratefully in the other 50%. Cancer is a strange disease. It's unpredictable. You don't know how aggressive it might be and so specialized that no one knows for sure if the chemo will work for the cancer or if the side effects will be tolerable for the individual. I'm thankful that chemo is killing my cancer and most days I have a genuine smile on my face.

I'm also older. Yeah! Yesterday was Xhevat's & my birthday. Yup, same day but four years apart. Of course we had to celebrate but wanted to keep it small. Being that my "expiry date" was also my birthdate, I was nervous if I'd get to this party. So I decided that our party theme should be expiry dates or best before dates... things that get better with age or things that we loved from our childhood. So we had wine/cheese/dried fruit/cheesecake/etc. We also had old things that were really good like Wagon Wheels, chocolate chip cookies, Tim Tams, and Coke in bottles. We had a smaller party and just had fun catching up and making some new friends.

It is good to celebrate the good... instead of allowing the sadness to consume you. Thank you for celebrating with me & happy expiry date to me!

P.S. Thank you to all who offered to babysit and/or drive me/us for my appointments. I've had so many offers (and birthday party planning on my mind), I'm having to figure out what to do. I will be sending out an email today with the "schedule." Thank you for all of your offers! All of my needs have been met.

I started my birthday by finishing my last dose of chemo for this cycle!

Our Invitation

Just a little morbid... but why not celebrate the present!

Reused Decorations (from Matias' Birthday)

Reused & Updated Flashcards from Matias' Birthday (Matias was introduced to tools immediately when he was born)

Our Birthday in 2005

A soccer ball caused a need for a cast

Showing off my real hair the first time I wore my wig

I've always wondered what he'd look like in a tutu. Now I know.

Happy birthday to us!

Celebrating with us

Help

I've said that I'd ask for help when I needed help. Well, I'm needing some help.

Since the diagnosis of my brain metastases, my driver's license has essentially been revoked. My last CT showed that I was down to one smaller brain metastasis (and possibly some floaters which aren't visualized by a CT). Most of the sensation to my legs and feet have returned and I have regained enough strength to take care of my boy by myself. So... I asked my doctor if there would be a possibility of getting my license back. The worst thing she could say was no, right?

After a bit of discussion, it was decided that I should have another CT later this month and my rad onc (radiation oncologist) can take a peek at what's going on in my head. I should also find out by the end of the month if I can drive again. I imagine that I'll either be flying high or totally devastated. I'm trying prepare for both answers.

In the meantime, I have a bunch of appointments in the next couple weeks and I'm going to need some help watching Matias and/or driving me/us to my appointment.

- Oct 20 early morning (well, early for me)

- Oct 22 early afternoon 

- Oct 24 noon

- Oct 30 mid afternoon

- Oct 31 late morning

If you're available to help, send an email to me at krista.krasniqi@gmail.com or give me a call and just let me know which appointment you're able to help me out with and I'll get back to you to confirm. The drive is from West Cloverdale to either Surrey Memorial or Jim Pattison Outpatient Care. Thanks.

And please be praying for us. Changing routines, lots of appointments and yet more emotions will be a challenge. Please pray specifically for peace, rest, and energy (for Xhevat & I... NOT for Matias as he has more than enough).

P.S. Speaking of prayer... at the beginning of this journey my family and I were absolutely thrilled as we found out we were being prayed for by thousands upon thousands from lots of places around the world! We thought how cool it would be if there was someone on every continent praying. 

Our problem: Antarctica & penguins.

We weren't sure how to get the penguins to confirm that they were praying. Well, I just received confirmation that I was prayed for in Antarctica! And no, I didn't learn the penguin's language.

I saw on Facebook that my friend's brother was in Antarctica and to make a long story shorter... I had her pass on my request & just found out today that I was prayed for in Antarctica! How incredible is that! 

(I don't think that God is impressed by the number of places where people are calling on Him... He just wants to hear more of our hearts and for us to listen to His. But for my human mind, I feel so incredibly blessed by His thousands upon thousands that are putting my family's needs before Him -- people from EVERY CONTINENT!)

Even the penguins are celebrating!

Turkey & Chemo

It's been a different Thanksgiving weekend. I've been having a tougher time & I'm thinking it's because I'm getting to my lower times physically & emotionally in terms of my chemo side effects. I've got a lot to look forward to and a lot I'm thankful for. But this Thanksgiving I'm having to choose to be thankful. What I mean is that when I'm not feeling as well, I have to choose to remember the many things that are blessings in my life.

My stubbornness shows itself in many ways... for right now, it's keeping my mind & heart in line and not letting it get too discouraged. Physically, I'm doing fine... just not quite as much energy as I'd like. I'm thankful that our boy is getting to spend a fun morning at the park and sleeping better at night (which makes life so much better for all of us). I'm thankful that my cancer cells are willing to accept my chemo assisted suicide. And I'm thankful for my family. God is good.

Celebrating with my two favourite people

I'm thankful for turkey dinner & my chemo (that's NOT my plate... it's the serving plate with leftovers)

Best. Job. Ever.

I've been my son's mom this week. This might seem like something normal and matter of fact... but the fact that I'm able to take care of both myself and my son at this point is pretty amazing and I'm so grateful!

Now let me tell you, my boy is not normal (says every mother of their toddler). He's smart and energetic. He's crafty & stubborn. He's creative and messy. I love my boy & love being his mama.

Best. Job. Ever.

Here are some of the funnier pictures of my week:

Wed: The mess I found after his "nap." As it turns out he wasn't napping and instead discovered his closet and old/new clothes that were neatly folded. The green bin he's sitting in used to contain diapers and butt cream.

Wed: This was happening while I was cleaning the bum cream that had been wiped around the room.

Thurs: The boy after his "nap" (please note that all his clothes had to be rewashed and refolded due to the butt cream incident the day prior). Closet rediscovered & clothes drawer discovered.

Thurs: Very upset that mama is washing his blanket.

Fri: 30 minutes into his "nap" today... Note the overturned tent, blanket stuffed down the vent and the vent cover hiding someone's face. And you can't smell the poopy diaper. At least no clothes to fold... right?

Fri: Wrong. After his nap... at least he slept? (Note the little feet sticking out from under the green blanket... this is how he slept)

Fri: When the blanket was removed... at least the tent is upright & my clothes-folding skills have been exercised this week.

Unexpected flowers for the front porch. All is well.

Six Months

On April 18 of this year, I went into the emergency room. I had a slight headache which hadn't gone away in four weeks. There were lots of possible reasons for my headache: stress, hormonal changes, medications, etc. The incessant pain was irritating but totally tolerable. What changed on April 18 was that I vomited... and at the same time, my speech and leg strength were affected. These changes happened very quickly.

As you already know over the next two weeks, I was diagnosed with brain metastases and "floaters." My symptoms got worse through Easter weekend, my dosage of meds were increased and I was hospitalized. I had two CTs, an MRI, minor surgery, and five days of whole brain radiation. We discussed many things with my doctor including what I would want done if I had a seizure or my heart stopped. My doctor also told me that an average life expectancy for a diagnosis like mine was six months.

We were shocked and scared.

I came home from the hospital needing help to do everyday things for myself and take care of Matias. Being a strong(willed) person, I had a lot of difficulty accepting that my symptoms would stay the same or get worse and I struggled with accepting help. I felt cheated out of being a mom as I helplessly watched others care for and experience the joy of my son. I felt cheated out of being a wife as I couldn't support my husband or do simple chores.

We were encouraged by my healthcare team to do things while I still had my strength. We went to Kosova to see our family there and introduce our son to them. In hindsight, I went at my lowest physically and came back with a very heavy heart. It was great seeing family but I was physically and emotionally spent.

Six months. It didn't seem fair. I was jealous of the time others were spending with my boy. I wanted to do more physically but my body wouldn't agree. I felt like I was a burden to my husband and family. I had hope for the future but was really down about the present. I didn't question my faith but my heart was aching with questions.

I didn't feel comfortable with sharing my prognosis with everyone as I was simply trying to process everything going on inside of my own heart and head. I even avoided certain people because they reminded me of how quickly my six months were passing by.

August's CT scan changed many things. I had felt like I was getting stronger through the summer but I wasn't sure if it was just feeling better cause I was off steroids or if I was truly doing better. My CT showed that I had good reason to be feeling better -- 8 of my 9 metastases were gone "without a trace." My doctor and nurse were thrilled to give me this news.

I was able to truly celebrate my son's second birthday. We've had family pictures taken. I've climbed the Grind. These were all items that were ticked off my bucket list.

I started another cycle of chemo yesterday. Round three, cycle five (2 weeks on pills and 2 weeks off). And because I'm feeling strong enough, I'm going to try to take care of Matias "by myself" during the day. In a couple weeks, I'll hit (and surpass) the average lifespan of someone with my diagnosis. That is both monumental (for me) and incredibly sad (for the other half of the population that don't get to see six months).

I'll miss having my parents or sister here. I'll miss sleeping in & having dad take care of Matias. I'll miss mom's excited play with Matias and talking through my emotions. I'll miss my sister not knowing our "routines" and so I was challenged (in a good way) to do more. 

More than likely there will be a time when I'll be needing help again. Until then (as I've let my chauffeur and babysitters go home), I might be asking for help sometimes (I'm independent and have a little too much pride so this will be hard... but a good lesson for me to learn).

I guess the point of all of this entry was to help explain why I only recently shared my prognosis of six months... to let you know how well I'm doing today... and to ask for your continued prayer and support as we adjust life to my current ability & needs. Thanks.

Smiling and hurting