Joy

RIP Brigitte Levigne

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It is with profound thankfulness for her life and advocacy, and with deep sadness we share that our dear friend and lung cancer sister, Brigitte Lavigne who is also known as B or Bee Thevine, passed last week. She and her dear friends and family have participated in lung cancer advocacy, including making ribbons as part of The White Ribbon Project and supported others of us affected by lung cancer. They have been awesome supporters and advocates. Brigitte was one of my big encouragers, and I know many other members of the lung cancer community would say the same. We are so very grateful to have known her, and to have connected with her community.

Brigitte loved Easter. Last Easter she gave me flowers and a card. She gave so much joy. She was a silver lining of lung cancer for very many of us.

Here is her beautiful obituary (pasted below):

Obituary of Brigitte Lavigne

Peacefully on Thursday, April 14,2022 surrounded by her family at the Ruddy Shenkman Hospice, Brigitte leaves behind her caring and supportive husband, Kyle, beautiful and courageous children, Kiera and Liam, wonderful brother, Ben, attentive sister-in-law Laura, lovely niece, Simone, loving parents, Michele and Ron, gracious parents-in-law, Brian and Janet, and thoughtful sister-in-law, Kathy.

Brigitte is ever so grateful to her strong community of friends, colleagues, and neighbours, who accompanied her and her family during these difficult times and throughout her life.

She will be missed by her strong and influential besties from Montreal, the poker princesses, University friends, the Bel-Air babes, her training partner and the girls from Toronto and PEI. These friends helped shape Brigitte in more ways than they could know.

Her amazing medical team was held in high regard. Compassionate and caring  oncologist, Dr. Nicholas, kind and concerned respirologist, Dr. Graver, palliative care doctors, supportive family physician Dr. Bordeleau, home care nurses, specialists, hospice caregivers. Brigitte benefitted from specialized care at the Ottawa General Hospital Cancer Centre, the IGFCC, and was regularly seen at the Queensway-Carleton Hospital. She had nothing but positive words about the medical care she received and referred to them as her dream team.

A loyal public servant who dedicated her career to public safety, Brigitte enjoyed running, spending time outdoors, engaging with people in her community and being a mom. Her children were the centre of her universe.

Brigitte was supported by a strong network of lung cancer sisters whom she fondly spoke of as her sisterhood. She learned about advocacy and was actively involved in The White Ribbon Project, participated in cancer patient research, donated her cells to a cancer line project and was a member of the ROS1ders. 

Brigitte was honoured by the ICAN International Cancer Advocacy Network through the Brigitte Lavigne Research Advocacy Program (Rare Resistance Mutations) to promote resistance research.

In lieu of flowers, please consider donating to the ROS1ders, Please click Here or the Ottawa Race Weekend Team raising funds for Lung Cancer Canada in honour of Brigitte,Please click Here

A private gathering will be held for family. A Celebration of Brigitte’s Life will be held at a later date.

To express your condolences or make a donation please visit http://www.hillcrestfuneralhome.ca

A Tree of Remembrance for Brigitte will be planted at the McAlpine Forever Forest, Vankleek Hill.

Funeral arrangements in care of Hillcrest Funeral Home Ltd., 151 Bond Street, Vankleek Hill, ON K0B 1R0 (866) 678-2002.

The picture above is from when I first met Brigitte in person and was privileged to give her White Ribbons with love. Right from the start she wanted more than one so she could also give Ribbons with love. This picture was taken before she was ready to publicly show her face or share her name, March 17, 2021.

Some of the pictures below are from our Ottawa Community Ribbon Build in August 2021, when Brigitte and her good friend, fellow advocate and The White Ribbon Project teammate Jesse, and her two children came to work on Ribbons. Brigitte loved all her people, but her children especially meant the world to her. We were so glad they could come to the build and we could meet them. It was great spending time with them and Jesse that day, as well as Brigitte. Brigitte gathered a community of amazing people, and spoke often of her family, friends and community. Other pictures are from a later date when Brigitte came over to put labels on and receive more Ribbons to give away. The day of the Ribbon build was so hot and humid that the ribbons showed no signs of drying anytime soon, so we had to be patient. It brought Brigitte so much joy to put on French labels. She knew that The White Ribbon Project is about love, that ribbons are given with love and received with love and that language matters. This was a good fit for Brigitte who was bilingual. She loved and advocated in more than two languages.

Brigitte activated a team who rose up doing advocacy. Even in this last month, Brigitte and her team did powerful work, delivering The White Ribbon Project Ribbons to our hospital and cancer centre in the west end of Ottawa, where she received much of her care, where I received my first rounds of chemotherapy back in 2013 and 2014. She participated in as many The White Ribbon Project community zoom calls as she was able, and yearned to be part of them when she wasn’t able. She and her team have made and will continue to make Ribbons. So far they have made 24 and 6 more are in process. They have given 20 of these ribbons with love, in addition to the several Brigitte was given by me. She also received a special honour with a named program that would focus on Research Advocacy on Novel Therapeutics for Resistance Mutations, i.e. a Brigitte Lavigne Research Advocacy Program (Resistance Mutations in Rare Cancers). She kept advocating until she could not any more, and she died knowing her community would step further into advocacy.

She powerfully loved people her whole life, and that did not change after her lung cancer diagnosis. A cherished member of our Ottawa Lung Cancer Support Group, she reached out with love to members of the lung cancer community locally and all over. She cared about people with her specific kind of lung cancer, and people with any kind of lung cancer. So many people talk about the difference she made for them. She loved us and she messaged us so much! She also loved her care team, spoke highly of them and thanked them. She made a special presentation at the West end hospital where she received much of her care and they did a special story about her. She embraced the inclusive nature of The White Ribbon Project, and gave Ribbons to a wide variety of people connected to lung cancer in various ways, including members of her care team. Even in the short time I knew her I could see that everywhere Brigitte went she brought joy and love. I’m so thankful to have met her, loved her and welcomed her into the lung cancer community. I’m so very thankful for our oncologist who encouraged her to connect and told her about our support group.

Three More Reasons to Hold onto Hope

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In a challenging season, there are opportunities to be seized. When life is hard, there is still good going on. Here are three more reasons to hold onto hope…

3) Canadian Cancer Society/Canadian Institutes of Health Research Cancer Survivorship Team Grants

Last summer Jennifer Wilson, director of research operations for the Canadian Cancer Society, asked me to serve with some awesome review panelists to help decide which survivorship team research projects would receive funding. The $10 million competition, CCS/CIHR Cancer Survivorship Team Grants, had the goal of improving health outcomes for cancer survivors. We anticipated that at least four teams would be funded, but then just before the announcement could be made, COVID-19 struck.

Everything changed.

Prior to COVID-19, this $10M competition would have been the largest investment in cancer survivorship research ever made in Canada at one time.

The recipients were announced this month. During the delay brought on by COVID-19, additional partner funds were secured from the Alberta Cancer Foundation and McMaster University, which enabled SIX grants!!

Jennifer Wilson and team worked hard during a global pandemic to make the largest investment in cancer survivorship research even larger! Way to go team! Here is the announcement

  • Fellow panelist Dr. Vicky Forster and I at the Toronto CCS offices Autumn 2019

2) Great news! The US FDA approved SEVEN new lung cancer treatments in May 2020 (during COVID-19)!!

Tabrecta – Capmatinib (METex14)

Retevmo – Selpercatinib (RET)

Opdivo – Nivolumab + Yervoy – Ipilimumab

Tecentriq – Atezolizumab (first line)

Alunbrig – Brigatinib (ALK)

Opdivo – Nivolumab + Yervoy – Ipilimumab + chemo

Ramucirumab – Cyramza + erlotinib – Tarceva (EGFRex19 or ex21)

WOW! WOW!! WOW!!!

What tremendous achievement from multiple teams! Time to celebrate!! #ResearchMatters

1) What a feeling!

This is insignificant in comparison, but I am also thankful because I have feeling in my hands this evening.

Neuropathy (nerve damage / dysfunction) is a common side effect from some cancer treatments. My hands have been generally numb or in significant pain (usually burning, stabbing or electrical) for the past six and a half years of survivorship. I try to keep perspective, since these are side effects of drugs that are keeping me alive.

Tonight I was making biscuits, and as I rubbed my hands together to remove bits of dough, I realised that I could feel the palms of my hands. They felt almost normal, and they still do, a few hours later. Happiness and gratitude! So thankful to be alive six and a half years after diagnosis!! My kids were 6, 10 & 12 at diagnosis, and now they are 13, 17 & 19. That means so much! I’m so glad I get to be here with them. So very grateful!

The costs of survivorship are real. New and improved treatment options mean that (in general) people are living longer and better post diagnosis. Survival rates vary significantly, but about two thirds of people will live at least five years after a cancer diagnosis. This means that over one million Canadians are now living with cancer, and that number is expected to rise dramatically in the next twenty years. (Canadian Cancer Society statistics)

Research matters, to improve both quantity and quality of life.

Research brings hope.

Hold onto hope.

#Shift

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This past week has been one of the best of my life! It has been enormously transformational: I will never be the same. What an honour to represent Canada, to represent lung cancer, and to help spread a little bit of the tremendous amount of hope which is available.

I come home a new person with a deeper calling. I have an even bigger love for people affected by lung cancer, a stronger passion to make things better, and an unbendable will to work hard toward that goal.

It was an honour and responsibility to represent Canada and to represent lung cancer patients at the American Association for Cancer Research Annual Meeting. I worked hard to make you all proud.

Twenty-three thousand people dedicated to fighting cancer gathered in Atlanta, and I wish I could have met them all! Thank you MP Catherine McKenna and your team for the Canada flag pins! I gave out almost 100 Canadian flag pins, and well over 100 business cards, telling our lung cancer story every time. I was honoured by these cancer fighters, and met brilliant leaders in the field, people who cared and listened. They are dedicated to improving outcomes for cancer patients, and research makes a difference! More research means more survivors. I thanked them for their work, and felt honoured when they thanked me for mine.

On my way to share my advocacy story at my poster session

I have many stories to tell, many photo’s to post, and more video posts to come on YouTube. I have been honoured to bring hope to people affected by lung cancer and other cancers, living in Canada and around the world. It brings me tremendous joy to serve as a channel of hope for the lung cancer community. #ChooseHope! … and keep your eyes open for more

I’m so grateful for all I’ve been privileged to experience this past week. It was an honour to represent, and I will keep working hard for people affected by lung cancer.

  • Evening receptions were opportunities to spend time with stellar people
  • Beautiful Atlanta

The difference lung cancer research makes

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Right in this moment, today friends, I have to tell you that I am overflowing with joy and a sense of wonder and well-being. Maybe that sounds a little crazy to you because of the lung cancer, but it’s true.

I am grateful beyond words for so much good in my life. The best is that I am loved, by God, by so many people, including my sweet daughter who makes me little “I love you” notes all the time. She is filled with love and joy, and I cherish her. I am so thankful to be here with her and with you all.

We were made to love and be loved. Love gives us a reason to live. I’m thankful to be alive so I can love, be loved, and make a difference for others.

And I am alive, more than five years after my diagnosis, I am alive! In fact, I feel better than I did a year ago. I keep feeling better and better. I can breathe well, most of the time. I can move my body in ways I haven’t since this whole thing began. Cancer, chemo and meds weakened me, zapped my energy, and made my body stiff and sore. But I’m regaining muscle strength and flexibility, which is such a good gift. For the past five years, I’ve pushed through the pain, telling myself, “Use it or lose it!” I know what it means to push through pain, being a former national athlete and a mom who delivered two of my babies without pain relief. (Did I mention the second one weighed almost 11 pounds?)

I’m feeling better, more able to move, in much less pain, with much more energy, and I am rejoicing! What a difference lung cancer research makes!

This new lung cancer med is doing more than keeping me alive. It’s helping me to live! I give thanks for lung cancer research! Let’s have more of it!

Advice for Christmas

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Several weeks ago I was invited to contribute tips for Christmas to a big lung cancer organization’s blog. I thought I’d also post some here in case any of you might find them helpful. They’re not just for people newly diagnosed with lung cancer. 🙂

I was diagnosed on December 12, 2013. I received my second chemo on December 24th. I felt like a deer in the headlights that Christmas. There were so many emotions and pressures. My kids were 6, 10 & 12. I knew it could be my last Christmas. Thankfully, I’m still here five years later.

None of us know how long we’ve got. Cherish every moment! Say the things you know you should say. Seek reconciliation, ask for forgiveness, tell them you love them. Take lots of pictures. Laugh and be silly. Live life while you can. Seize the day!

Some practical tips:

Change your expectations. Cut down your to do list. Say no to some of the events. Schedule in rest times. Actually block out times on your calendar for you to rest! 

Conserve your limited energy for what matters most to you. Let other people do everything else. If anyone offers to do something for you, say yes, even if it’s uncomfortable. Invest your time with the people who are most important to you, and limit time with those who zap your energy.

Practice self care. Bring nutritious food to a potluck and eat it! Taste that decadent treat that looks so delicious! (but if it doesn’t taste as good as it looks, stop after the first bite!) Get fresh air and exercise every opportunity you can.

Savour the moments. Seek out beauty and kindness. Look for things to be thankful for, and give thanks!

Ask for help. 

… and for those of us who are Christians, remember what Christmas is about, that God loves the world enough to give us all this precious gift of Jesus. Focus on that and the rest will fall into place!

Merry Christmas!

(Photo’s from previous years … I haven’t taken any yet this year!)

Unexpected Gifts

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I’m glad to hear that a number of you have tested your home for radon after reading my last blog post. Good news!

I must confess I’ve had a rough month, with a touch of the flu, then a cold which has dragged on. I still sound awful – coughing horribly – but I’m feeling much better and thankful / hoping to be kicking this cold to the curb!

But enough about that! I want to tell you a wonderful thing that happened several weeks ago. A complete stranger came to my house and gave me a quilt!

This “stranger” volunteers with Victoria’s Quilts Canada, delivering handmade quilts to people with cancer. A woman from church very kindly and thoughtfully asked them to make a quilt for me. She let me know it would be coming, so this was not completely unexpected!

What did surprise me, though, was that I broke down and cried when I saw the quilt!

When I learned that a quilt had been requested for me, I went online to learn about Victoria’s Quilts – you can click the link above if you’re interested. They have a lovely story and a strong volunteer base who seek to “bring physical comfort to those dealing with cancer, as well as spiritual comfort in knowing that they are not alone in their struggle.” They currently distribute about 600 quilts per month, with a lovely little card.

I got to chatting with the woman who delivered my quilt, and it turns out that when I was a toddler, she lived across the street from my family. We don’t remember each other at all, but what a small world! I asked if I could take a picture of her with the quilt, but she said no – it’s not about her, it’s about the quilt. Before I had any idea a quilt had been requested for me, before I had even heard of Victoria’s Quilts, people were thinking of me, caring for me, and working on a quilt just for me.

I have a confession to make. I feel small and ungrateful, but shortly before my quilt arrived, I wondered if I would like it, and prayed a quick prayer that I would like it, that something about it would be special for me. (Like it wasn’t enough that so many people put so much kindness and care into the whole process…)

You may know that I love being in or near water. If you’ve seen the art in my home, almost every picture is of water. I love the beach!

When I caught my first glimpse of my quilt, I started to cry because it’s the beach! When I look at it, I see a beautiful gift made especially for me! I am so grateful! I was surprised by how deeply significant this generous gift was to me.

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I have so much to be thankful for, including thoughtful and generous friends and strangers, my husband and kids who have done so much extra around the house these past few weeks (my 17yo is cooking dinner as I write this!), special times with family, and Easter – a celebration of the most deeply significant, loving, generous gift ever!

Whether or not you are celebrating Easter this year, may you and yours be filled with joy and gratitude! And may you know that there are people cheering for you, even if you can’t always hear them.

 

Looking intently…

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It’s been too long since my last post. I know this because so many of  you dear folks have been asking how I’m doing. I apologize for causing you concern. I am grateful for your care, kind words and prayers. I’m not really sure why I haven’t posted in such a long time … part of the answer is that I have been busy living life rather than writing about it! I’ve jumped into some new hobbies which have held my limited focus. Part of my current reality is decreased discipline and increased forgetfulness, and not really feeling like spending much time on the computer.

But probably the deeper reason I haven’t posted with my typical frequency is because I have needed time to work through some cancer grief. Cancer attacks and steals too many beloved people, and some days that’s really, really hard. This winter has been a hard season, but not without grace and joy and beauty. Sometimes we have to look intently …

March brought scans and good news from the oncologist: cancer is shrinking! Praise God! Each month a large box arrives by courier, free of charge, containing my supply of pills. Four in the morning and four in the evening. Each time with a high fat large snack or meal. No wonder people on this med tend to pack on the pounds! I am no exception, and I am happy to be alive and fat, though many of my favourite clothes aren’t fitting. Alive! So much to be thankful for! We rejoice!

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I feel better than I have since before my diagnosis. I’m still tired and have various aches and pains and side effects, but so much better than the side effects of any of the other treatments! Praise God!

In March, our middle child went on an exchange to a small hamlet in Northern Canada. What a great opportunity for which we are very thankful! The youth from up North are scheduled to arrive here for six days next month! When we first signed him up, I told the group I wasn’t sure how much my health would allow me to help. I am thrilled to say that by God’s grace I’ve been able to do my part, including baking several dozen cupcakes in February, and making art for a silent auction fundraiser.

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I hunkered down* through the last of the Winter, and threw myself into a variety of creative pursuits. I made three long scarves, numerous beaded jewelry items, and started painting for the first time since I was a kid. Painting became part of my Lenten pilgrimage, and I learned more about looking intently. I was pleased with the pictures I made, and had fun doing it! I found inspiration in the daily bird calendar, which is obvious if you look at my work! Here are just a few, starting with the Toucan which was my first ever:

My first
Messing with mixed-media

*Hunkered Down is a reference to a Malcolm Guite poem that has been rolling around in my heart and mind this Winter season. You can read /hear it by clicking on this link: Malcolm Guite “Because We Hunkered Down” Feb. 2017

Here is my Easter 2017 picture:

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This next one was inspired by my son’s trip up North. I made it for the silent auction, but it was kind of hard to let it go! The words in the “footprints” are from “Dene Laws”, which he saw at the Northern school. The person who won this item in the silent auction was one of the trip leaders. He took photo’s which inspired me to make this art, so I’m really happy he has it!

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I’m always eager to head out in search of Signs of Spring! What a gift to be able to be out walking and breathing (fairly) easily! I’ve enjoyed many walks with family and friends. So much beauty! So much joy! Grace abounds! Looking intently …

Before I forget to mention, I’m off in the morning to Washington DC, for LUNGevity’s big Lung Cancer patient HOPE summit, which runs Fri. evening – Sun. I’m also attending the Advocate summit all day Friday. I’m looking forward to connecting with some excellent people and hoping to learn a lot! I’m thankful for the anonymous donor who made it possible for me to go, and I hope to honour that generous gift and make a difference! Being away for four days is a huge step for me, and it will take loads of discipline to not overdo it! If I’m up for it, I may tweet about it #DCHOPE17, and possibly post on fb. I certainly plan to update my blog upon my return! 🙂

Very often I am deeply moved by the care and compassion that dear people show. I promise you: it makes a difference! It’s hard work, being a cancer patient. Thank you for helping our family carry this load! You never know the full impact of a kind word or deed. Look intently for signs of love and goodness, and know with certainty that grace abounds even beyond what we can imagine or see! May you receive showers of blessing, and may you see flowering and fruitfulness resulting!

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Freedom!

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I feel so much better! The side effects of this chemo continue to be difficult, but I’m alive and I can breathe pretty well. There are times when I even forget about the cancer … something I previously hadn’t been able to do since every breath was a reminder.

I used to cough constantly – especially if I was talking. I couldn’t sing, shout, or even talk much since my voice wasn’t working. Walking – even part of a short block – at a brisk pace not only gave me shortness of breath, but started off coughing that wouldn’t stop for up to half an hour. Some evenings I wondered if I could make it up the stairs to my bedroom.

Right now I feel so free! I typically go the whole day without coughing. I can sing a little bit, and shout to my kids if I need to. I still suffer from shortness of breath, but not nearly like it was before: there’s a spring in my step!

free!

Yesterday I took our kids and some of their friends to the park. I cycled there, and together we formed quite the procession on bikes, scooters, a skateboard and roller blades! The kids had a blast at the park and I thoroughly enjoyed watching them and taking photo’s.

Even my chest x-ray last month showed improvement, and chest x-rays don’t show small changes! I am so very thankful for this new chemo and for the greatly improved health I’m enjoying!trying new things!

I have another chest x-ray and an appointment with my oncologist next week, and I am hoping we’ll be able to slightly reduce the meds I’m on and thus hopefully reduce the side effects.

I am so grateful for this freedom and energy, and I want to make the most of it!

I hope that you know deep freedom, and are living life to the full!

PS: Guess who we keep finding at the park … a gift that brings us joy!

Guess who we found at the park! IMG_1882 IMG_1886 IMG_1901

New Chemo and Side Effects

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I started new chemo meds on Monday, and lots of people are asking how it’s going. It’s hard to know so soon: my nurse said it would take about a week to know how it’s working. This has been a tough week for me since I think I ate something bad over the week-end, and I’ve had an upset tummy for most of the week. I’m tired from being off the steroids as well, and have spent most of the week in bed. I don’t know how much the new meds may be contributing.

Last night I experienced some exciting drama in the form of strange visual effects. I saw flashes of light, and all kinds of unexpected things in my peripheral vision. I don’t know how to describe them, except to say they remind me of watching tv in the “olden days”, when ghost images would appear beside the actual image when the reception was poor. (Really frustrating when watching hockey: which guy is going for which puck?!) It was a bit like that, with repeated images swirling around the edges. Pretty wild!

The pages of information from the pharmacist indicate that these kinds of vision changes are a serious side effect from this medication, and urge the patient to tell their doctor straight away. I called my oncologist’s nurse this morning to ask about this, and she was unaware of this side effect. There are no doctors that she can ask until Monday. She said since it only happened once that I should continue with the meds. I’m thankful I’ve got an appointment with my oncologist on Monday.

Apart from the exciting light show last night, I seem to be experiencing only a few side effects. I had some horrible headaches earlier in the week (also a side effect), but they seem to be gone now. I’ve got a strange taste in my mouth and a bit of nausea, but it’s not too bad.

I don’t know how the new meds are affecting the cancer. I think I may be coughing a bit less, but I’m not sure. I’m definitely still coughing.

Many of the side effects from my first chemo continue, but it’s possible they’re improving. I still seem to bruise easily, but didn’t get a bruise from my blood test on Monday. My hands and feet continue to be numb / have strange feelings, but occasionally – perhaps increasingly – they feel more normal.

One thing I’ve been reflecting on lately is the idea of waiting. It’s relatively easy to wait for a short amount of time, but it grows increasingly difficult, especially when pain is involved. When I was labouring with my first-born, I was expecting it to take 24 hours or more. I wanted to deliver him without any pain meds, but shortly before he was born I asked my nurse what pain meds I could use. She said, “You’re doing so well!” … and then came another contraction and I forgot about the possibility of pain meds. Jono was with me, holidng my hand and getting me ice chips. Their encouragement made all the difference to me. Their encouragement kept me going when I felt that the pain was too much and the path was too hard. Even so, I’m glad my boy came quickly (about eight hours, if I remember correctly!) because labour is hard work!

Here is a quote which captured my imagination some twenty+ years ago. It’s by S.D.Gordon, from his book Quiet Talks on Prayer.

Waiting

It means steadfastness, that is holding on;

patience, that is holding back;

expectancy, that is holding the face up to see;

obedience, that is holding one’s self in readiness to go or do;

it means listening, that is holding quiet and still so as to hear.

What do you think of this? What do you think it means? How does it ring true (or not) to you? Is it capturing your imagination? Does it apply to your life now? How would you describe/define waiting? What makes waiting easier / harder for you?

I’m feeling much joy these days, and I’m so thankful for my family and friends and gardens and birds and the beauty in this world. I’m hoping I’ll be able to get out for walks again sometime soon.

Thank you for your encouraging words, faithful prayers and support. You have no idea the difference you make.

Three of my Valentine’s Day Highlights

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Our plate overflows with chocolate quadruple layer cake!

1) Not only did I get to go to a “Look Good Feel Better” workshop (for cancer patients), but I got to make a joke which caused the entire room to erupt in laughter. To bring these women such joy brought me immense joy! Wonderful volunteers and program!

2) My oncologist called me a “superstar” because I’m doing so well on the chemo and my blood work is excellent! I think it definitely has a lot to do with all the healthy food, warm thoughts and prayers people are sending – thank you!!

3) Hanging with my family this evening …