Little Accomplishments

It's been a tough road since Easter and my brain mets diagnosis. Physically it's been especially challenging but I have made improvements. Some of these limitations have been caused by the actual tumours, some have been caused by the radiation, some have been caused by the steroids, and some have not been able to be explained. In their own way, each may have cause my physical challenges, but also each could be the reason why I've improved. I can always blame God for these improvements as well. :-)

Below are some changes that have happened physically... I like to call them my little accomplishments.

- speaking without sounding like I'm drunk

- going to the bathroom by myself (and not needing assistance to pull down my pants or get back up to standing)

- while we're on the bathroom theme, successfully squatting while using a public restroom (and avoiding all those icky toilet germs!)

- not needing to sit down when I take a shower... I have the power and endurance to stand!

- standing up from my bed without having to push off with my hands and repositioning myself in bed with greater ease

- getting tattooed (and only telling my husband & parents afterward... and they didn't even disapprove!)

- getting into a car, van or SUV and not having to lift my legs into the vehicle with my hands

- walking up the stairs at the end of the day just holding onto the railings for extra security and not to needing to pull my body up another step (update: two nights ago for the first time I walked up the stairs without holding on to anything... this is me taking chances and living on the wild side)

- I even recently "stepped" over the locked baby gate without going through the gate itself

- meals... I love cooking and can still cook... It just takes me a little longer to move around (but I'm certainly not quite up to housecleaning or changing poopy diapers... I gotta use my cancer card for something, right? :-)

- picking up my boy and playing with him (although I'm really cautious about this and still get other people to do this the majority of the time... especially if there are stairs involved)

- I can't quite get off my steroids yet but I'm almost there (and am really hoping to be able to get off them if my brain can handle it)

- I've been getting better sleep lately (especially when my boy sleeps). After more than 14 weeks of a headache, steroids and just the stress of everything, it is good to go to sleep at night and wake up at a reasonable hour in the morning. I'm certainly grateful for better rest.

While I've certainly had some increased strength and energy physically, it's been hard in other ways. Xhevat and I woke up early today to watch his sister's wedding on Skype. We were supposed to have been there but our plans had to change and we had to go earlier. It's tough not being with family today.

Thursday was a good day. My boy called me Mama, it does not matter that it was raining or that I was wearing a toque and am wrapped up in a blanket. As well, Xhevat has started a month of Compassionate Leave. It will be good to make some memories while I'm still feeling this well.

One of my six tattoos: The person tattooing me exclaimed midway through tattooing me, "Wow you tattoo really easily." What's that supposed to mean? Are my blue dots bigger than normal? Maybe they're just darker. I'll just take it as a compliment cause I don't know any better. And I'll definitely remember to tell my next tattoo artist before they start.

I've Missed You

I miss my church family. I haven't been at our home church for the last couple weeks as I was in Kelowna. When I was last there, I was getting out of the building as quickly as I could with tears of shame and embarrassment running down my cheeks.

Many of you have had really different experiences of church. For some of you, it's a Christmas and Easter thing. For others, you might never have entered the door just because. Some of you hold different beliefs and going to church would be unnecessary to you. And others of you may have been to church but have been hurt and carry deep wounds by the people of the church.

I'd like to share a little of my experience of church as an adult. The building is often referred to as the church whereas it really is the group of people that join together as they journey and grow in their relationship with God (and I'll admit that I sometimes use both definitions). I've been a part of my church since '97. I started attending this particular church because my roommate knew people and I had a vehicle so I was the driver. And I'm still going seventeen years later (yes, I'm that old).

Our church first met in a school gymnasium and I helped lead a youth drama team in the hallways of the school. A few years later we moved into an old, converted mushroom factory in the industrial area of Cloverdale... and that is where we still meet today. This is not your typical church.

Our church (the people) is not perfect. We are a group of people who make mistakes but are striving to be more like Jesus every day. Sometimes our mistakes are small and go unnoticed. Sometimes our mistakes are big and the ramifications of those mistakes have caused great division in our church. Going through those great moments of hurt has caused both division and unity in our church. And I believe that it has been up to the individual (whether they stayed at the church or left) if they chose to grow in their relationship with God or allowed human mistakes to separate them from God and the church. And if people found another place to grow in God, that is good. Personally, my greatest heart wounds have come from people who have been a part of the church and I know that I have caused deep hurts to those within the church. Again, we're not perfect.

Since getting diagnosed with cancer, my relationship with my church has changed. I was involved in my church before my diagnosis (my focus was being on a team that looks at serving the needs of others and sharing about Jesus both within our community and around the world). But instead of being the one leading and serving, my church was now doing this for me. We had meals brought to our home, rides to appointments, babysitting for Matias, special gifts, gift baskets, things dropped off at the door, and monetary gifts. Our church even took a special offering to cover our trip to Kosova last month (we had intended on paying for this ourselves last year when we'd first planned on taking Matias to Kosova but our church wanted to bless on us by helping us out this way... this has been especially humbling).

More importantly than any of this, our church has supported us through prayer & encouragement. I cannot tell you the number of times when I've been feeling low, lonely or was starting to spiral downward and I received an email, phone call or visit that just made my day. Other days I had people who would cry and mourn with me and allow me to be sad. And all through this journey we have had people supporting us and carrying us when we just didn't have the strength.

I've said it before and I'll say it again, going to Sunday's church service is the hardest time of the week for me. I feel most vulnerable there. When I'm on chemo (like now), there are a lot of germs that Xhevat, Matias and I can be exposed to. But that's not the vulnerability that's the most difficult. Between the worship songs (which when you really listen to the words often talk about difficulties, dying, and heaven), the message or sermon (which often just hits me to the core of what I want to be learning and being but am struggling to become), and the people (who just love us so much and hurt with us greatly), I feel both incredibly raw and gently soothed.

We usually try to sit at or close to the back of the church. It is a place that you can escape less noticed if needed. It's also a place that you're not noticed as much when you're crying (tissues are always kept in my purse). The second to last row is actually better than the last row. It's less likely that people can hug or touch you from behind when you're trying to stay away from unnecessary germs (because you don't have an immune system) or just need a place to be present but also at times to hide a little.

Now that you know my seating strategy for the church service, I want to let you know that the people that sit in those seats around me have amazed and overwhelmed me. They have come around our family with love, prayers and concern. We have made new friends by sitting at the back of the church. They've asked some tough questions and laughed with us. They've been with me when I've been strong and when I've fallen flat on my face (I can laugh about it now).

I cannot thank you enough Pacific Community Church. Thank you for not being perfect because I fit in much better that way. Thank you for accepting me, loving me, serving me and for being the hands and feet of Jesus in my life. I'm looking forward to walking this journey with you & growing in our relationships with God with you. See you on Sunday! I've missed you.

www.pacificcommunity.ca

22 Months

My boy is twenty-two months old and has he ever changed from the little six and a half pound boy I first met. The evening I first met him he was placed on my chest and Xhevat and I were overwhelmed with joy and amazement by this little human being who was entrusted to us. Not too much later we were surprised by a knock on the hospital room door and in walked my niece then my sister and then my mom. They had driven down from Kelowna to surprise us when they heard I was in labour. They were there when Xhevat first held our son. The pride, joy and smile that this little boy brought to his daddy the first time he held him still brings tears to my eyes.

What a different boy he is now! He's almost twenty-four pounds of rough and tumble energy! He prefers to run rather than walk or sit still. He loves to be the center of attention and whether it is a room full of family or crowds on bleachers at a softball game, he will make sure everyone is cheering and clapping their hands.

He can say mama and daddy but he still does not call us those (or any other) names. He loves to imitate in gibberish & can belt out anything from grandpa's classical music to singing along with the radio to Disney's Frozen score or the Little Einstein's theme song. While he may not say a lot of words or sentences, he knows the alphabet, colours, shapes and can count to ten. This last week he's learned the sounds that the letters of the alphabet make. Wherever he goes, he will point out what he knows. If we're grocery shopping, he'll pick out letters or numbers on signage or packaging. Today at McDonald's he saw the golden arches and kept on saying "mmmm" (the sound that the letter "m" makes).

He will run and play and laugh until he's exhausted. He doesn't mind getting dirty or splashing in his kiddie water toy. When he gets to the playground, he loves to climb as high as he can and would walk off a high edge without fear (more than a little scary for his mama) but yet will be totally enraptured by a pebble or twig. He also loved buckling his belts (stroller, high chair, car seat) and we are thankful he has not yet learned how to unbuckle his belts.

And you never know until you put him to bed whether it will be a easy or difficult. Some nights he goes to sleep with no difficulties and other nights he wails and thrashes until you wonder whether he'll end up injuring himself. My sister can attest to being awakened a dozen times one night and the next night he sleeps through the night (other than the occasional mid-sleep outpouring of gibberish).

He's gotten a little "touchier" lately (which I'm really enjoying). Now sometimes being touchier involves actually being still and cuddling in next to me but much of the time it just involves being in closer proximity to me. This might mean he's getting tickled (which he loves and after he escapes, he comes back for more) or it might mean he's climbing and rolling all over me while I'm lying on the couch or it might mean that in his energetic state that he just rams his little body into mine (I bruise more easily than him right now).

With his new knowledge of his numbers and letters, I've been able to help him learn his letter sounds and more using flashcards. This is definitely something I can do and is well within my energy levels and physical capabilities. And most of the time, he loves it... and so do I!

He is oblivious to what is going on in my life and gives me such absolute joy, sleepless nights, pure love, too many diapers, innocence, pain & bruises (when he gets upset, sometimes he thrashes his body... just this week he was upset and back arching off the netting of both sides of the pack n play... there was no part of his body that was touching the bottom of the pack n play), and just an amazing reason to get up each morning to see his eyes light up when he sees me and see his smile and hear his squeal. God is good. 

I am so glad that I'm able to do this. And I wonder if perhaps God is allowing some of these neurons to fire in his brain at this time in order that I can see it and be a part of it. Whatever the case, I'm thankful. I'm thankful to be a part of my boy's life today and I'm thankful that I have gotten an opportunity to be as involved in his life as I have. I'm so thankful to have had him in my life every day of these last twenty-two months and pray that I have many more months (and years) of making more memories with my boy and his daddy.

P.S. My little one & I have arrived back at home after our week at my sister's. It is good to have the three of us back together (we've missed our husband/daddy). Had a wonderful & restful time there with family (I know my sister will miss us but not the poopy diapers or being awakened multiple times at night)! Made some special memories... dinners at my parents, seeing two sets of my aunts and uncles, watching my boy play with his cousins, homeschooling, soccer games (niece's, nephew's and World Cup), frozen yogurt, family movie night (the Lego movie), lunch with just my sister, conversations... I could go on and on. It was a special time for which I'm thankful.

Tomorrow I have radiation on my spine (to decrease some of my discomfort) and bloodwork. Tuesday I see my oncologist and Wednesday, if all things go as planned I start Round 3, Cycle 2 of chemo. Praying for not too many side effects from radiation, that my bloodwork will show that my chemo is working, that my neutrophils would be high enough to get chemo, for regaining more physical strength, and that my symptoms would be stable so that I'd be able to get off my steroids. This last week has been good & I'm hopeful that this week will be just as good.

Meeting him for the first time

A selfie taken by my boy these days

My Son's Father

I remember very clearly when I was told, "You'll be a great mom Krista." This time it was different. It was being said by a man that I was interested and who was interested in me. And I could see him being a great dad! I saw in him an ability to earn the respect of the large groups of children at our English camp but in a way that they had fun and actually enjoyed listening. That was one of the first things that I noticed about him (the good looks were just a plus).

I am so thankful for my son's father. Since this is a day to celebrate dads, I want to honour the man who has fed, changed diapers (including the poopy ones), bathed, entertained, put to sleep, woken up with, taught both developmental milestones and values, etc. to a very special little boy and has taken on many of these things singlehandedly this last year. On top of that he has cared for the many needs of our household, dog, and me all while holding down his job. I think he's pretty amazing... and so does my son. 

It is so clear to see how much my boy loves his daddy by the way he runs into his daddy's open arms when he comes home from work, the way his head snuggles into and his arms wrap around his daddy's neck when he's lifted up and the combination of delight & terror in his eyes when he gets thrown into the air only makes him laugh and cling to his daddy even more. My boy & his daddy have a very special bond.

Looking to an uncertain future, I know my son will be loved, cared for and nurtured in a Godly way and will be instilled with the same values I have because of my boy's daddy. I believe that there will be days when he doesn't feel that he can handle anything more and he's going to feel like giving up and he's going to need a community of support. But God is bigger than all of this and I entrust my boy's daddy (and my boy) to Him.

My boy's daddy is also pretty quiet and private about things so I might get in trouble for even saying what I've said publicly... I just can't help but be so grateful for him in my life that I'm willing to risk it.

Now don't get me wrong. I'm not going to say he's perfect (cause he's not) and I certainly don't need to stroke his ego (cause he knows how I feel about him already)... but I do need to say that my son has an incredible father and for that I want to honour him today. I love my boy's daddy and I am so incredibly blessed to have him in my life. 

One day our son will be able to let you know how incredible you are... until then, let me tell you... you are an amazing father and I love you more! Happy Father's Day!

The first time he held his son

Unconditional love between a daddy & son

Photo bombed

Tattoos & Travels

It's been a good week. After getting my heart over my fall, I've been just nursing some sore muscles and a beautiful bruise. I also started my second week of round three of chemo. In comparison with previous rounds of chemo, it feels a little strange to be "just" swallowing four big pills twice per day. The side effects seem manageable so far and I'm really hoping they will stay that way.

I also had a follow up with my radiation oncologist and it was suggested to get a little more radiation on my spine to decrease some pain I've been experiencing. So Friday I had another CT to find the perfect places to zap my spine followed up by them giving me some tattoos. For those not familiar with radiation, sometimes they like to zap big areas (like my whole brain radiation) and sometimes they like to target specific spots (like they're going to do on my spine). To do the latter, they need to have marks that don't move so they can focus the radiation with precision on a target area. All of this to say that I now have six blue dot tattoos on me! Wouldn't my parents be proud of their kid getting her first six tattoos in one day!

Not much new other than that. My next week was light on appointments and so Matias and I went with my sister & niece (who'd been at our place for the week) to Kelowna. It will be another change of pace, some different scenery, and mini vacation for us.

P.S. As I've reflected upon falling publicly surrounded by my church family, it actually seems quite natural. As vulnerable as I feel when I'm with these people, they (along with many others around the world) are the ones that are surrounding me with prayers, love, support, encouragement, etc. And since on most days, I look like your average person and not someone who is full of cancer, it is fitting that what's going on inside of me showed itself externally. And there's no better place to fall than surrounded by people who love you & care for you. It was actually really quite beautiful to have you share your responses to my fall... so many different perspectives and thoughts about a single shared event. I've really appreciated hearing them.

To top it all off, my bruise is in the lovely shape of a heart (see picture below)... so I can't help but feel loved, even when bruised. Thanks for loving on me!

My heart shaped bruise on my chin... you can see the heart in it, right?

A rainbow on our drive...thankful for His promises.

Falling

At the end of the church service today while going up for communion I tripped and fell. I now have a nice bruise on my chin.

I'm sad, embarrassed, a little tender and very aware of how my cancer is affecting me. While I look quite "normal" from outside appearances, I can't feel a decent part of both of my legs (and this is due to where my cancer has decided to grow in my brain) and have lost a decent amount of muscle in my legs. The best that I can describe the lack of sensation to my legs is that it's like you've been sitting in a funny position and both of your feet are asleep. When you walk, your feet sort of awkwardly hit the ground harder than they should. You don't know exactly where you've placed your feet or where the ground is. Everything sort of tingles. You can't feel if you're stepping on a pebble but you can feel the deep pain of stepping on a toy. You don't know if you're stepping on a flat or uneven surface. And because you can't sense when you're off balance, it's very difficult to correct yourself when you do hit an uneven surface.

Falling hurts. Of course it hurts physically. And there are all of the risks of bruises and broken bones and worse things that go along with it. Falling hurts my heart and my pride even more. It's weakness. It's inability. It's losing control. And it's hard.

It was very difficult to go to our church service this morning as I was feeling quite vulnerable and emotional going into the service. I can only describe the time of describe as being soulful... a way for me to come before God in an honest way that expressed my heart with all of its vulnerabilities to Him. The message was encouraging. It's less about the mistakes you make and more about the direction you're heading in your relationship with God.

And then I fell face first on concrete. My husband was right beside me. Other people came to help. I said I was ok. I got up and continued on to receive communion. Embarrassed and hurting and with tears in my eyes, we got our son and left.

It's not easy to have a disease is slowly destroying your body. It's taking away my ability to be a wife, mother, daughter, sister, friend. It's not easy falling in front of a few hundred people who love you and hurt with you. It's not easy when a disease is slowly taking you away. It's not easy being very aware that of the changes that are taking place.

It's been a rough day.

Bruised

Quirks About Life in Kosova

The best memories of my trip all include our family. Our time in Kosova was centered around just spending as much time with our family as we could & make memories. Xhevat was born & raised in Prishtina, Kosova. He is #7 of 9 kids (and the youngest son... which in Albanian tradition is the son who receives the inheritance and has the greatest responsibility to care for his parents, family and home). His family still lives in the same apartment and so bringing Matias to Kosova is allowing him to experience many of Xhevat's childhood memories (like sitting to eat his meals in the same place as Xhevat had done for many years).

The travelling part of the trip was perhaps the most challenging. We were very thankful to only have to take two flights to get to Kosova (in the past it's been three and with long layovers) and our layovers were very decent -- Vancouver to Munich to Prishtina going and Prishtina to Frankfurt to Vancouver returning. Airport to airport ended up being about 15 hrs going and 19 coming back (including a 2 hr delay cause our engine wouldn't start and then they misplaced our stroller here at YVR). Matias did decently on all flights except one where he cried the entire two and a half hours. Other than that, he was just active. In the past I've slept on planes to get over jet lag more quickly so not being able to do this due to an active toddler was challenging to me. We were very thankful for the bulkhead rows on our long flights and used the bassinets to relieve our arms for the moments he chose to sleep. The extra space on the floor for him to play & his inability to hit/kick the seats in front of us was also a plus. Decent travel experiences... just long.

We rented an apartment across town for all of us siblings who lived out of country -- six adults and four kids between six months and four years. Generally we'd sleep and eat breakfast at that appartment and then either walk (not me), drive or take a taxi across to the Krasniqi apartment. The taxis we took were like the London taxis... so we could throw Matias, even while he was in his stroller, straight into the taxi. No seatbelts were used in any travel other than on planes. Thanks for praying for our safety.

Medically, I developed some initially concerning symptoms on day two or three of our trip. We had our numbers of hospital contacts ready. And we also were in contact with my sister (a Physician's Assistant... used a lot in the US but not as much yet in Canada). Anyway, we'd FaceTime or send pictures & symptom lists and advice back and forth. In the end it appears that it was just being on steroids for a while and experiencing some of the side effects of that (currently my cheeks are still a little chubby and I look pregnant... especially at the end of the day!). There were new "bugs" that we all got into and between Matias & Xhevat & I, we each had our colds, coughs & sniffles with or without fevers. Very minor considering all that was going on. Your prayers covered kept us safe medically on this journey.

Our days would be spent eating & talking & hanging out with between 20-30 people (that's just immediate family). Xhevat's mom would each day cook amazing meals for everyone (his mom has an incredibly special servant's heart & that's why we tried to take our turns and help out with making meals a couple days). We'd have our Turkish coffee & Russian tea. Someone would always be making a special sweet or treat for us. And Xhevat's mom would cook anything and everything we wanted... Pasul (a white bean dish and Xhevat's favorite), pite me spanaq (a healthier and much more delicious version of spanokopita), corbe (a cross between a soup and a stew made from potatoes & other veggies), speca me leng (roasted peppers in a sauce with milk & a special kind of cheese, eggs & sausage in various ways, salad (just tomatoes, cucumbers, peppers & green onions... no leafy greens here!) & our absolute favourite... bread! Oh I could eat multiple loaves of fresh bread over there in one sitting. Absolutely delicious! And just for interests sake, meals would be offered around 10, 2 & 7 or 8. We were loved on & served extravagantly and able to love on & serve our family in return in a small way.

With all of those people in the house, Matias received entirely way too much love and attention and time with family... & he loved it! Even the first night that we arrived he stood proudly in the center of the room "commanding" everyone be clapping... and everyone complied! When we were celebrating my sister-in-law's upcoming wedding and the ladies were dancing, Matias was in the center of the circle dancing & clapping his hands! His grandparents, aunts & uncles and cousins would take him out for walks (well, in his case, he just runs) or to the playground five to ten times per day. He had a tough time playing so much there. :-) All routines of meal times, nap times, bed times, etc. were thrown out the window. Matias was introduced to, loved on and welcomed into the other half of his family and I am so thankful to have been a part of it.

As Matias was entertaining or being entertained, Xhevat and I would stay back and chat with family. We certainly had many emotional and difficult conversations. Personally, talking about my cancer was quite difficult as most of my family disregarded my situation as being as serious as it is -- I think this is how they're coping (I can't even begin to fit these conversations into this entry). So we talked politics and unemployment. We talked about health and the water situation. We talked about marriage and parenting and discipline. We talked about everything under the sun! There were also conversations around death and hope. And I was able to clearly share about my hope in Jesus. We all are going to die and so while we're living, we need to make sure that we prepare our hearts for that eventuality. While my heart struggles with dying, it is at completely at peace with death and as a matter of fact, I'm excited for Heaven because my Jesus has paid for my way into Heaven. And because of my relationship with Him, I have full assurance of being welcomed into Heaven to spend forever with my God! We just need to have our hearts ready. Again, the majority of these conversations are being done in Albanian. I was conversational in Albanian at the best of times when I lived in Kosova and I was pretty happy with being able to share from my heart after not being immersed in Albanian for three years. And that is also because of God and your prayers.

They watched us parent using words like "no" and correcting behaviours we didn't like and they we're surprised both that Matias actually would listen & obey (children, especially of the male variety in their culture are often quite spoiled). We were regularly told to leave him alone especially when touching electronics or the unlit propane heater or glass bowls with food. One time out of the blue my father-in-law said "no" in English to Matias and asked him to stop doing something. Matias obeyed & my father-in-law was shocked. I couldn't help but smile and I believe an "I told you so" might have slipped out of my mouth. Even Xhevat's dad was impressed.

They added "bravo" to his collection of cheering words. And by the end of our time there, he could follow certain Albanian commands and questions. In English he learned to count to 10, say the alphabet, and recognize numbers and letters (upper and lower case and in various fonts)... just a needing to have a proud mama moment. And he's only 21 months! He's absorbing so much! It's been so fun to watch & be a part of!

But Kosova also has it's quirks.

- Limited or no toilet paper can be flushed (a garbage can for used TP is available but in many places, you need to provide your own).

- At the Krasniqi's the water goes off every afternoon and so each day when the water comes back on, you fill up the couple dozen bottles that you've used for washing dishes or hands and in preparation for the next day's water outage.

- Sunny Hill, the subdivision where the Krasniqi's live has been beautified with little grassy areas, playgrounds, etc and is just so beautiful! Matias had so many places for his aunts, uncles & cousins to play & explore.

- A taxi will always come in four minutes always... this one made me chuckle every time we were told it.

- Bread is unfortunately baked fresh every day... oh how I love their bread!

- The restaurant where we got married was under construction (or being demolished) and we were disappointed that we couldn't get back there on a date. Restaurants change frequently in Kosova.

- While I've been welcomed into the family, a woman's word still doesn't hold very much weight so I had to have a few "talks" with men or others in the family as to what was acceptable or unacceptable to do around my child (i.e. If you are watching my son, you can't be smoking... and especially not right in his face.) It seems simple enough, right? Yeah... not so much apparently.

- Matias had never heard the call to prayer and one morning it started ringing out from the (at least) three mosques within our neighbourhood. Not knowing any better, Matias raised his hand (as his grandpa Wagenhoffer taught him) and began to vocalize along with it. I would have recorded it but our Muslim host was right there and I didn't want to offend. I don't think my smile was entirely hidden behind my hand.

- Our souvenirs of Kosova were mainly snacks (chocolate, certain chips, cookies, gummies, etc) and while most could probably be bought here, they are special to us cause they're from there. We also brought back my favorite Kleenex (yup, it menthol scented & I love it!), some baking pans and a rolling pin (think of a long maybe 1/2 inch diameter piece of wood that is a meter in length). I've used it three times so far!

It was a wonderfully difficult trip and one that I am so glad that I could take. All of the worries, struggles, lack of sleep, steroid side effects, frustrations in conversations, hurts, doubts, fears all pale when I've been able to point to my hope for a future and strength for today in Jesus.

Thank you for covering us in prayer on this trip.

Selfie: Dad, Son & Nephew

Our Monkey Playing: He'd be taken out here to play often five or more times per day... everyone wanted their time with our precious little Monkey

Lunchtime: Sisters, Nephews, Me, Mom & Cousins

Being Chauffeured: Me, Monkey, Sister- in-Law & Nephew

Dad, Monkey, Xhevat & Mom

Macchiatos & Ice Cream Date: Just Us

Sisters-in-law

Hanging Out Together: Nephews, Nieces, Brother, Parents, Xhevat & Monkey

Arriving Home Tired but Grateful.

Harder But Easier

Yesterday I received my chemo teaching from the Cancer Agency pharmacist... information about the drug, how & when to take it, what to do if you forget a dose, etc. Nothing really earth shattering. Then there were all of the new potential/probable side effects. We had looked into our choice of chemo and while the list didn't surprised me, it is much closer now to becoming my reality.

So this morning, I got out my plastic baggie, broke open the blister pack and swallowed my four pills of chemo. Done and easy, right? Well, maybe not quite so.

Up and till now, I've received chemo by IV. It's been done for me and to me (with my consent, of course). I was surrounded by wonderful chemo nurses who would check up on me and other people walking a similar journey. The "social" side of receiving chemo has been a very positive impact for me on this journey.

Now I'll just take my chemo with breakfast and dinner... a definite convenience in terms of appointment times, babysitters, chauffeurs, and pokes. But also a change in terms of the support I'll be receiving (this time via the phone from the nurse line) and will not have contact with other people receiving chemo. And it's a little strange to think that I'm going to have to give myself the medicines that will be hopefully causing my cancer cells to die but also causing my side effects. All of a sudden I'm much more involved in this process.

 It will be different and I'm sure I'll adjust. 

One of the ways I've adjusted is by installing an app on my phone to remind me of which medications to take and when. It may sound silly but some days I have no clue as to what I ate for breakfast let alone if I took the proper weaning dose for my steroids... which means I'm watching for a whole other list of symptoms that could indicate that my brain still needs them.

I'm learning very slowly to receive help in various, new ways.

Starting chemo today is both harder & easier... but on we go.

My new Chemo

A Silly Cake for My Chemo Nurses... even if they won't be giving me my chemo (and that top left blob is supposed to be a brain). Gotta celebrate that at least I have a brain, right?

Quietness & Chemo

I've been quiet for a bit since returning from Kosova and processing a lot. Blog entries have been started & may or may not be finished. Just trying to get through jet lag (and sleeplessness from steroids), process the last few weeks & make decisions for the future. It has been quite emotional.

I met with my oncologist this morning. My CT shows that the cancer in my liver & spine are remaining stable. That is good. The majority of my bloodwork is normal. That is also good. I don't know about my brain metastases. It wasn't/won't be scanned unless there are new symptoms and although I'm curious, it probably doesn't matter in the long run.

Xhevat and I were able to choose from my treatment options which ranged from getting chemo injected directly into the fluid space in my brain to doing nothing & stopping treatment. We have chosen an oral chemo. There aren't any great options for treatment of my brain metastases due to their locations but we'll give it a try. So tomorrow I'll have a teaching session & start chemo again... round three!

Thank you for continuing on this journey with us.

The view from where a friend & I had a picnic today... wonderfully relaxing & just what I needed.