Sweet Springs

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Dear Friends,

It’s nearing the end of January and I’m noticing a pattern. When I started this blog two years ago, my goal was to post at least once per calendar month. So far so good. But lately I’m pleased to report that there isn’t much to say on the health front. Refreshingly dull, really! So dull, in fact, that my oncologist almost forgot to tell me that my latest CT scan again showed “No Evidence of Disease”!

If I reflect for a moment, I’m sure I can cobble together a few more updates for you from this month …

My physiotherapist graduated me from appointments for my shoulder. I continue to do daily exercises and see small improvements from week to week. She thinks I should be better in another four to six months.

I keep taking the daily meds, continue to go to many appointments and have regular tests as part of the clinical trial. One week out of three is pretty full of this activity, and it still really tires me out.

My energy level continues to gradually increase, as does my desire to make plans for the future and my hope to one day be able to work again.

I continue to have side effects. But here’s some exciting news: a couple of weeks ago a member of my Bible study began a comment with, “Now that you’re feeling better …”. I had to clarify that while I’m feeling somewhat better, I’m actually still suffering from a lot of nausea and other things that I then described to my Bible study group. A week later I told them I was feeling remarkably better: Significant improvements in those areas I mentioned! “It’s good to know specific things to pray for,” replied a Bible study member. Just as I suspected, they have been praying for me!  I give thanks, and it spurs on my own prayer life!

I am grateful beyond words for those who pray for me. Some of you I see regularly. Many of you I don’t even know. Thank you. You continue to make an immeasurable difference for me and our family. I’m sorry if I should have been more forthcoming about some of the difficulties I’ve faced. I don’t like to complain, but I also haven’t meant to be dishonest. It’s better for me to try to focus on the improvements, no matter how small, rather than getting bogged down in the mire of the many struggles I face daily.

Thank you for the words of encouragement that continue to buoy me. Thank you for the gifts which serve as a reminder of so much good. Thank you for the many kindnesses which have helped our family soldier on through what has been a sad and scary time.

We’re not all the way through the valley yet, but lately I’ve been reflecting and realizing that there is much value in this valley. We often yearn for those exhilarating mountain-top experiences, but rivers flow in valleys, and I’ve been privileged to drink deeply from  sweet springs. I’ve been surprised by joy and hope and love and grace and mercy in this valley … and we journey on.

May you drink deeply from the sweetest of springs,

Jill

A few steps forward, a few steps backward …

HibiscusIn spite of the good work of my physiotherapist and all the stretches and exercises I’ve been doing, my shoulder is only a bit better. My physio said it would likely take six weeks, and I’m trying to be patient and disciplined!

I’m feeling more energetic at times, and at other times completely exhausted. I can’t find any patterns (apart from the fact I tend to feel more fatigue in the afternoons & evenings), so making plans is challenging and sometimes discouraging. On the upside, my 8yo and I enjoyed a long stroll together yesterday evening, and I felt up for another walk this morning. This is encouraging!

duck watchingIMG_0272signs of fall

I’ve now got this itchy rash on my arms & legs – mostly where my skin was tanned in the summer. My oncologist doesn’t know what causes it: possibly a combination of the meds and something else. A friend suggested putting aloe vera on it to help soothe the itchiness, so I tried it and it seems to make a big difference for a few hours. That made falling asleep last night easier than it’s been in a while!

Having a sore shoulder and being itchy isn’t so bad compared with not being able to breathe well. I’m trying to keep things in perspective. 🙂

Here’s an encouraging note:pollinators at work

Every three weeks I have two days with clinical trial appointments. Blood is drawn from my arm each of those days. Left arm on Mondays, right arm on Tuesdays. The Monday blood is sent to a local lab to make sure I’m healthy enough to continue treatment. The Tuesday blood marks the beginning of the next cycle of treatment, and is sent farther away to a lab for the clinical trial data.

Last month I started thinking about the process, and wondering why I had to have blood removed two days in a row. Couldn’t the procedure be changed so that I only had to be poked once every three weeks? (I also get poked whenever I have a CT scan, but that seems unavoidable.) As I thought it through, I couldn’t see any reason that would require blood being removed two different days, except that’s the way the trial was set up. I was open to the likelihood that I was missing something, since I have no background in medicine or pharmacology.

So, at my appointment last month, I raised the question with my oncologist and clinical trial administrator. They could understand my desire to avoid being unnecessarily poked with a needle, and promised to look into it.

When I received word of my appointments booked for this week, something was different! I went in to the clinical trial unit at the hospital, and they poked me once and filled up all the vials that were needed: two for the local lab and a bunch more to be sent away for the clinical trial lab. Only one poke this week! Yay! Then I went to see my oncologist, and he told me that several hours of discussion went into this decision. I’m so thankful! … and I hope that many future clinical trial patients will benefit from my raising the issue and the people in authority investing those hours.

Sometimes we feel powerless. From what I’ve observed, cancer patients tend to feel this quite a lot. Going though tests and treatments is really hard, and even before the diagnosis much of our power is stripped from us. It’s scary and stressful and painful and unpleasant.

I’m glad I was able to think about the blood work process, and felt empowered to ask the question. I’m thankful for those who were open to considering the possibility and willing to invest hours in wrestling with this question. I’m also grateful for the generous folks in the clinical trial section who now graciously welcome me there two days in a row instead of one. (I still have to have the other tests on the second day.) I know that makes extra work for them. Everyone is so busy. There are too many cancer patients.

Earlier this week I was thinking it would be nice to bake some muffins for our family, but I was too tired. Then a friend arrived at our door with homemade muffins she had baked for us! The next day another friend came with some more! Now we have two types of delicious muffins. We are so abundantly blessed!

Last week an envelope containing two gift cards for the grocery store arrived in our mailbox! Thank you, anonymous friend!

So that’s some of my news! … and I will also add that on my walk today I ran into three people who hadn’t seen me in a while (I haven’t been out and about much in the past two years), and they all commented on how good I’m looking. At least one didn’t recognize me at first. They all love my long curly dark hair, and one even said I look twenty years younger!

I’m thankful for these things and for so much more!

neighbourhood garden Fall flowers beauty

From Hill to Hill

When friends near and far are asking how I’m doing and why I haven’t updated the blog, I know it’s time! 🙂 The short summary is: I’m quite well, praise God! Life has been full in many good ways the past couple of months, and computer challenges made it difficult to update the blog. We are so thankful for the generous friend who gave us a new  computer which I have sufficiently figured out and am thrilled to be able to use! (Apparently you can teach an “old dog” new tricks! haha!)

Time and time again I am blown away by the generosity of people! There are so many stories I could tell from the past couple of months, and I hope to at some point. Let me simply say we feel very blessed on many fronts!

The numbers are good!

The numbers are good!

Here’s the health summary:

The clinical trial drug seems to be working very well! I have better days and worse days, but overall I feel better than I have in many months. The side effects are mostly manageable and overall seem to continue to decrease. I am always looking for the patterns, wondering if I change my eating habits will the GI effects diminish, for example, … but so far there is no discernible consistency. One day I’ll be mostly fine, and the next I’ll be napping all afternoon / evening. Fatigue hits hard and startles me, like running into a wall. But I’m learning to adjust my expectations and try to do things when I can.

One day in the summer I wanted to walk through a long and hilly, sandy path to the lake. I’d heard the waves were gorgeous and I really wanted to see them and play in them. My 8yo was with me and I said, How about we try walking to the top of the next hill and see what we can see. I really didn’t think I could make it all the way there, but wanted to try a little. Each time we got to the top of a hill I asked her if we could try for the next one. We kept reaching for these little goals then re-evaluating, and amazingly we made it all the way through from hill to hill to the lake. The colours were beautiful, and the scenery spectacular! I wished I could have brought my camera! We played in the waves which were huge for a lake and reminiscent of the ocean. My daughter was thrilled that I could play and climb with her! I didn’t stay long, but thoroughly enjoyed the opportunity, then turned around and headed back. I felt exhilarated and exhausted, but mostly spent the walk back praising God and thanking Him for giving me the strength and courage to make the trek, and for the joy of the whole experience.

This past week was tiring, with all the usual routine tests and appointments that happen every 3 weeks, plus the CT scan which I have every 6 weeks. I have to take meds before the CT scan to help prevent allergic reactions, and that means setting my alarm to take them once or twice during the night. I am grateful for the meds and the care, and the good people with whom I interact, but having things on three days in a row and missing out on sleep takes so much more energy than one might expect. I was very tired going into this week, but yesterday was feeling amazingly well. Sometimes these gifts of energy and ability come as beautiful surprises!

There have been so many beautiful gifts and surprises this summer, and I would love to tell you about them all … but today I have groceries to buy! The summary is that we’ve had many joyous visits with friends, the kids all seem to be settling into their new school rhythms well so far, and we are feeling very loved and blessed. I hope to fill you in on more details in the coming weeks.

Thank you for your love, prayers and support. We cannot find words to tell you how grateful we are!

Beautiful blooms!

Beautiful blooms!

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Setting up for the usual tests

Setting up for the usual tests

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“How are you doing?”

“How are you doing?” is a question that can be tricky to answer! Obviously the answer depends on a lot of things, including the context: the grocery store clerk will get a very different answer than my oncologist will! Close friends will likely get a much deeper answer than I would post publicly, but sometimes I just don’t feel like talking about it – even with the best of friends. I’m so thankful for all those who understand and encourage, who pray for us (if they’re the praying sort of people) and support us in many ways.

A lot of people are asking how I’m doing on these new meds. So far, this one seems better than the last one (which was much better than the IV chemo). I’m still puffy, but not ballooned-up like before! I’m hardly coughing, and can sing a bit most days! I love to sing, so this is both exciting and bittersweet because I can’t sing anywhere near the way I could before. The joint pain (from going off the previous drug) is diminishing. Nausea slows me down, but doesn’t usually stop me! My digestive track seems to be getting used to the meds, and tummy upsets are decreasing. I continue to experience painful intermittent stomach cramps from around 3:00pm until bedtime. It may be my imagination, but I think it’s better than it was a couple of weeks ago.

One thing that’s hard to figure out is the fatigue. I’ve always loved to push myself to the limits: to do as much as I can without overdoing it, endeavour to reach that line without crossing it! Now I know the line is in a completely different place than it used to be, and I feel grief about my significantly diminished capacity, but what’s tricky is that it feels like someone keeps sliding that line around with no discernible pattern! It’s impossible to know how much I can manage because it varies dramatically from day to day.

I pray and I pay attention, trying to find the sweet spot: the best rhythms of activity and rest. I wear a pedometer most days in case the measuring of my steps will help me find that balance. I know it’s not a precise science, but I often feel like it’s completely random and I have no wisdom at all about the abilities of my body.

Often I’m exhausted by dinner time, and if I can pull together the energy to cook dinner, then sometimes I need to rest before I can eat. Right now, that’s probably the hardest thing. If I get a second wind after eating, that is bliss – largely because it helps me interact better with my kids and supervise their music practices, homework and chores.

Then there are activities which energize me on some levels, but tire me on others. It’s hard to weigh out the cost-benefit ratios sometimes, but I tend to err on the “going for it” side of things!

I went for a little hike with friends, and that nourished me deeply … but if I recall correctly, the kids had “fend for yourself dinner” that night! I’m glad they’re old enough for this, and (generally) wise enough to (mostly) make nutritious choices!

Below are some pictures from my little morning hike. It’s amazing what there is to see and hear if we pause and open our eyes and ears. There is so much life, goodness and beauty to appreciate!

What about you? How are you doing? What are you thankful for? What are you grieving? Who encourages you? How are you doing with your various boundary lines? Do you have good, trusted friends with whom you can open your heart? With whom could you take appropriate steps to trust more deeply and grow closer? What nourishes you? How might you open your eyes and ears? Who will you bless today?

I pray a blessing on you, dear reader!

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Group selfie, strategically cropped for this public post! (I’m the one in the hat.) 

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Spot the owl! I love my little blue camera: it’s so easy to carry and takes great pictures, but – like all of us – it has limitations!

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Two ducklings with their mama

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Wood duck reflection

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beaver? muskrat? otter?

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“Night Heron”, is what some friendly strangers called this.

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Night Heron

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Too quick for my camera, but there’s beauty in the blurriness!

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I don’t have to go hiking to see beauty: this is my neighbour’s lovely garden:

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This Long Day

Home from another long (9-hour) day at the hospital and exhausted. Many ecg’s and blood tests done (for the clinical trial). Good conversations. Lots of walking around the hospital to stretch my legs. Laughs with a good friend who brought me yummy green juice made from celery, spinach, kale, cucumber, parsley, pear and lemon – she knows me well! Even green juice couldn’t keep me energized on this long day.

Home now. Kids OK. Ate dinner. Can’t wait to go to bed …

Clinical Trial Update

On Friday May 8th, I learned that I get to eat breakfast for the foreseeable future! I’m part of a clinical trial which is examining the effects of food on absorption of a new drug which is under examination here, and not yet available by prescription.

Afternoon testing supplies

Some of the testing supplies

I started Monday the 11th, with a long (8:00am to 5:00pm) day at the hospital. Some excellent nurses poked a needle into me which remained there for the course of the day so that at regularly scheduled intervals throughout the day they could collect blood samples to analyse how this new drug was doing in my bloodstream.  Several times they also attached about ten electrodes to my skin to record how my heart was doing. There were a few other tests which also occurred in a blur of a busy day. These were all a routine part of the clinical trial.

One poke lasts the whole day!

One poke lasts the whole day!

Electrodes for the ECG

Electrode for the ECG

Vomit bucket unused!

Vomit bucket unused! 🙂

I didn’t feel like a guinea pig, though. I felt very well cared for by skilled (and happy) professionals who made a long and tiring day as enjoyable as it could possibly be. Well, they didn’t give me chocolate, but one nurse who was going on break near the end of the day even went so far as to ask if she could bring me something.

Over the day I learned a bit about them and their families and observed some of what their job was like. It’s a small unit with a lot going on. Patient care comes first, and they always seem willing to answer questions or stop and talk. At times during the day they were very busy: one patient forgot to come in for her morning appointment and had to be squeezed into the crowded afternoon schedule. Another patient had to be whisked away for some additional tests, with many repeated explanations given to the patient as well as three accompanying family members. Blood samples were spun out in the centrifuge, chairs and beds were rearranged in intricate patterns, and scheduling at times seemed like an advanced logic puzzle.

Monday morning this tray was filled with empty tubes. Late in the afternoon, only one set of blood tests left!

Monday morning this tray was filled with empty tubes. Late in the afternoon, the timer counts down to the last set of blood tests for the day!

My morning was basically non-stop tests, with little downtime in between. Two nurses were needed at times because some tests had to be performed simultaneously. The afternoon was a bit quieter, with time for short walks around the hospital between tests. I enjoyed visits with my husband and another friend, and did a little reading.

I went back for a shorter visit with fewer tests the next day, and again this week. I will be spending time (mostly short visits) with these nurses weekly over the coming months. I could think of worse things!

So far, this drug seems to be working! I am still coughing, but much less often – and it doesn’t feel like I may explode whenever I cough. I’m tired, but less so than I was in recent weeks. I’m sometimes short of breath, but no more than before and perhaps even less. I am thankful!

I’m also thankful that the side effects seem better than with the previous drug. It’s hard to say at this point, but I understand that usually side effects decrease after the first week or two and this is what I’m hoping for! So far, there has been a fair bit of nausea but no vomiting. My tummy is upset a lot of the time, but this may fade. No visual disturbances, so I may try driving at night again at some point.

So far, so good!

Last time I asked for prayer for my side which was extremely sore. I rejoice to report that the pain is completely gone and has been for some time. Very thankful!

We continue to be grateful beyond words for the countless ways so many people show us love and kindness. The other night as we sat down to a meal which an amazing woman from church had prepared and delivered to us, my 8yo daughter leaned onto my arm, looked up at me and said with the most beautifully expressive voice, “We are so blessed!”

Yes, we are!

We are so grateful for the thoughtful generosity of so many!

We are so grateful for the thoughtful generosity of so many!

Gerberas are the happiest flowers!

Gerberas are the happiest flowers!

Spring is bursting out in our garden!

Spring is bursting out in our garden!

Our garden changes too quickly in Spring!

Our garden changes too quickly in Spring!

Another glimpse of Spring in our garden!

Another glimpse of Spring in our garden!

Check out the texture on this tulip in a public garden!

Check out the texture on this tulip in a public garden!

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Wood duck: the other day we noticed a new neighbour!

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Group hug! Goodbye to good friends!

Group hug! Goodbye to good friends who came for a visit!

An Extraordinary Week

I’m resting on the couch with my feet up, reflecting with thankfulness on how good and how strange this week of testing was. I am so glad I made it through! I’m coughing a lot, and looking forward to starting new meds on Monday. (Hoping they work really well!) There are so many stories I could tell and too many thoughts to mention, but let me give you a taste …

Tuesday was blood tests and EKG. As I’m driving to the hospital, the huge dump truck beside me starts moving into my lane! I stayed calm and reacted the way they taught me to in driving school. All was well and I made it safely to the hospital, praise God.

I was rather shaken and physically shaking when I arrived at the chemotherapy unit and checked in. In the waiting room, a man verbally attacked me for no rational reason, but it hit me hard. I’m guessing he was probably feeling frightened and dealing with his own stuff in an inappropriate manner. I was feeling extra vulnerable due to the truck incident. I walked away, then burst into tears. I am thankful for the caring staff at the hospital who comforted and protected me. I made it home without any further incidents!

Wednesday was the bone scan, and my husband Jono asked people to pray that I wouldn’t cough much. I typically cough almost constantly when lying on my back, and that’s how this test is performed … but you have to stay still to get results.

I lay down on the machine and coughed almost immediately, but – and this is hard to believe – that was the only time during the course of the test that I coughed! Wow! Praise God! Thank you for asking for prayer, Jono. Thank you all who prayed.

Thursday was the CT scan – also on my back. Let me say that it went really well. No problems. No coughing. No allergic reactions. Praise God! Thank you for praying.

Now let me tell you what was challenging …

Last CT scan, a friend’s appointment was scheduled right after mine so I greatly enjoyed spending time with him and his wife. This time a different story: a prisoner in an orange jumpsuit with handcuffs and leg cuffs was scheduled right before me, so I shared the inner waiting room with this man and two security guards. I was feeling a bit scared before I got to the hospital, and my apprehension increased. Then there was an emergency situation with the person ahead of us, so we ended up waiting together for a very long time  – over an hour! I thank God for keeping me calm and helping me to see this man as a person rather than simply a prisoner. I am thankful for freedom! I am also thankful for the opportunity to be in an uncomfortable situation that was safe. I spent a fair bit of time praying while I was there! I am thankful for the friends who were praying for me.

So this has been an eventful week on several levels, with new situations and many emotions to process. I am thankful for the love of God which surrounded me, even in the presence of the yelling man and the prisoner. I am thankful for the peace of God which filled me, even in this variety of stressful situations. I am thankful for the gift of prayer and the way God’s peace pushed away anxiety and fear when I prayed. I am thankful for God’s protection in the midst of danger. I am thankful for the mercy of significant chunks of time on my back without a cough. I am thankful for the kindness of strangers, and the beauty of Spring erupting all around me. I am thankful for the love and generosity of friends and family. I thank the Lord who made me.

I thank you.

Do not worry about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. (Philippians 4:6.7)

P.S. –  If I could ask for one more thing … Thursday morning a woman bumped into my arm. It was a fairly hard bump from something she was carrying as she rushed past me. She apologized, and I didn’t think much of it at the time. I figured I’d have a bruise, but it seems to have triggered severe pain and muscular spasms in my rib cage. I’m tired and sore, but the week-end is coming and I want to be present with my kids. If you’re the praying type, I would appreciate your prayers for energy and healing! Thank you!

Quick update: tests and changes

Hi folks – it feels like a very long time since I last posted, and there is news to update you with but not much time or energy. Here is a rushed post as I’m waiting between parts of a test. Apologies: I can be wordy when I’m tired and in a hurry!

There is a new drug that will hopefully work better than the medication that I was on since last July. (I’ve now stopped taking the old one, and am coughing more and feeling joint pain as a result.) I am privileged to be part of a clinical trial which is scheduled to start Monday. This week is therefore filled with various required tests to give us a baseline to compare results. I’m taking most of them in stride, but there will be another CT scan and bone scan, and I feel a slight bit of stress about them.

My last CT scan went well: I don’t remember if I gave you an update after it, but I had a lovely time with a friend whose husband had the same test scheduled directly after mine. It was such a gift to be able to spend time with her and to be so deeply encouraged by her! I am so grateful!

In case you didn’t hear the story, they had changed the protocol for people who’d had allergic reactions to the dye they inject. So I’d been told to simply show up for the test and remind them I’d had a previous reaction, then they would give me something just before injecting me. Once I arrived, however, they said that due to new protocol, they could not administer the test and would have to send me home. (I was supposed to have taken a bunch of meds on a whole schedule starting the day before.) To make a long story short, they had mercy on me and let me go along with the old protocol (just as I’d been mistakenly told), gave me the meds and the test went fine! I’m a bit nervous about tomorrow’s CT, but hopeful that all will be well!

This afternoon’s bone scan should be fine too. I went into the hospital early this morning to be injected with radioactive material, and I’m scheduled to go back in an hour for the test. They strap you onto a bed and a machine spins around, taking amazing pictures! The only tricky bit is that the machine gets really close to the face and it can be a bit much for someone who can be claustrophobic! Last time I prayed a lot and felt very calm. I tried to keep my eyes closed and “listen” to my imaginary ipod. As long as I didn’t think too much about how close that thing was to my nose, I was fine. Every time I felt panic even hint that it was going to rise up, I prayed and felt peace. I am so thankful!

Today I’m not worried, but I am very tired! I usually do at most one thing per day and these tests make for long (for me) days. Also I’ve had to get up earlier than usual and that tends to knock me out!

So, what’s this clinical test about, you may be wondering …

One of the new drugs that has been developed for my particular kind of lung cancer is undergoing nutritional testing to see how the body absorbs it. (At least, this is how I understand things!) I am privileged to be part of this testing which will help future cancer patients get the best treatment possible. So I will be assigned to one of three groups on Friday, which will indicate what my dose is and whether I take it on an empty stomach or with a meal. (If I get to have it with a meal, they give us guidelines for what we can eat.)

I’ll have to fill in a simple daily journal (see photo), and take a bunch of tests (including spending a few days at the hospital having blood removed every hour or two), but this new drug is supposed to be really good, with fewer side effects than the previous one.IMG_5154

I was a bit worried about the days of blood tests, so I asked about the procedure. They should only have to poke me once, then leave a thing in me to which they can attach the tubes when they need more blood. Sounds easy!

Yesterday I had a bunch of blood taken and I only felt one little poke. Hardly hurt at all. This morning the technician who made me radioactive was so good that it did not hurt one bit when she poked me. Honestly, it hurt more on the way out than it did on the way in! I thanked both women for the amazing job they did. They are skilled … and kind! I am blessed to be served by such professionals!

I have been thinking a lot lately and have many stories that I could tell you, but my energy is so limited. I hope to write more frequently, and plan to once I have a little more energy.

I’m thankful for time with friends, little walks, signs of Spring, and so much beauty in this world.

Lastly, let me say that I am so grateful for the energy to truly be present with my kids, to make things and do things with / for them, and encourage them to have friends over, and teach them things, and tell them (as well as showing them) I love them. This is what really matters, and I am so thankful for all these opportunities!

Seize the day, friends, seize the day!

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