Our Corpse Flower

A year after we moved into our house, late May rolled around and we found an odd looking plant growing along the side of the house. It was smaller, a bit less than a foot in height but it grew out a bit. We watched it for weeks and Googled what we thought it could be. Eventually, it bloomed and a horrible smell wafted out from it. What in the world could it be?!

Turns out, it is a Corpse Flower. Though rare, they bloom every few years and only for 24 hours at a time. They attract flies like crazy during that time and you can smell it walking into the garage. True to its namesake, there is no missing the scent. It smells like a rotting animal – on a good day.

We have no idea how this particular plant ended up in our yard but every May, it returns. One year it blooms and the following it grows but only seedlings bloom in its place. The years that it blooms, it also has seedlings growing alongside of it. We have only had one bloom at a time but the seedlings seem to multiply more and more every year. Last year we even found two on the opposite side of our house!

It’s always exciting to see how many will grow each year when May comes around. It is something that I think little man will grow to love and treasure. Though this year it is but a seedling, I am excited for what new growth and excitement it will bring.

Tell me, what cool plants have you accidentally found?

Spreading the love…

Imagine yourself walking down the beach and finding a decorative stone or two. You look at it and smile – the sentiment bringing warmth to your heart. “Believe”, “Wish”, “Love”. You keep walking but leave the stone behind. A few feet further and you find another. The color catches your eye this time and you can’t help but pick it up. Perhaps it’s the Red Phoenix (πŸ˜‰). Perhaps it’s a heart. Maybe a beautiful word of “Hope”. Whatever image is there, you hold that stone and stare deeply at it. You feel the love that went into each stroke and the tears begin the fall. Walking away, you take the stone with you…feeling it’s presence, the love that it filled you with. It is exactly what you were looking for that morning. It was exactly what you needed to find.

My aunt and her family have started creating these amazing stones. She walks regularly in a beach up north and finds beach stones along the way. Her family collects them and brings them home to paint and leave behind at their next visit. She even recently started making small chemo bags out of burlap sacks and painting rocks to match tick-tack-toe boards to give away.

Such an incredible gesture of selflessness, kindness and pure LOVE. I wanted to share this moment with you all. It brought me to tears and I love seeing the pictures of her and her family creations. They wrap themselves up in the love that they find each and every single day. I don’t think I could be more proud. Team Red Phoenix! πŸ’š

Day 2, dose 1

I set my alarm this morning to prepare for day 2 of chemo pills. I don’t typically eat breakfast upon waking up so this is a new routine for me. Food almost immediately, followed by 30 minutes before I take this morning’s dose. A reminder helps tell me to stop what I’m doing and eat before taking my pills.  Little man had a rough night for some reason and I awoke with a decent headache but I can’t complain. It’s hard to believe that just a week ago, I was preparing for brain surgery. I am so incredibly blessed with my abilities to heal. Yes, there is a long road ahead but I am so thankful for today.

I have received a lot of requests about how to help during this time. I don’t do well with these questions and I shy away from the answer mostly. To be candid, any and all help is appreciated more than I could ever express. Your words of encouragement, concern and prayer do not fall on deaf ears. They are felt and heard all the way across the world. I feel your LOVE.

My friend Seema set up a booster campaign, if you are interested in t-shirts – https://www.booster.com/teamredphoenix?share=7131469753615390&utm_source=facebook&utm_campaign=mobile-campaign-page-share&utm_medium=social&ref=facebook_social_mobile-campaign-page-share&utm_content=teamredphoenix&type=1&side=front

And lifelong family friends have also set up a fundraising event – on Facebook as πŸ’š Rallying for Red Phoenix πŸ’š – that includes wrist bands!

My sister, Sarah, who you can also find on the I am Red Phoenix Facebook page is organizing other ways to help and is simply a click away from any questions that you may have for me.

As I type this, I can’t help but cry. This disease will not define me or my family but it is absolutely a part of who I am and my journey in life. It takes an entire village and I feel the Team Red Phoenix army forming around me. I have such love and admiration for each and every single one of you.

As for me, I am going to take my 2nd morning dose and enjoy this beautiful day that God has gifted each one of us. Spread the love, my friends. Always.


3LB4L – Wishes

Earlier this year, I reached out to an organization called 3 Little Birdies for Life. They grant wishes for cancer patients like me. A few days prior to my most recent diagnosis of Stage 4, I received an incredible gift of a new camera from them. It is unlike anything that I have ever seen before and frankly, I don’t feel deserving of it! Thankfully, they even set me up with lessons – personal and group! It’ll be some time before I get moving on the lessons with everything happening but in the meantime, I thought that I would start with the basics…also known as β€œauto feature”. πŸ˜‰

The day after my diagnosis, we took a local train ride with Jacob’s friend from the womb – and our dear family friends. It was a hot day filled with fun adventure as the boys – just a week apart! – rode on a real vintage coach, pulled by a 1907 steam locomotive. It was so cool! The boys would not stop yelling about the β€œchoo-choo”, listened attentively to the noises it made and loved watching the lake go by in the open windows around them. We took an early train (thanks, Groupon!) and the boys had the entire train car to themselves – with us parents, of course. The day was so much fun and their tiny faces were completely precious the entire time. Definitely something we will go back and do again in cooler weather!

I decided that particular Saturday was as good a day as any to practice on my new camera so I took a few shots. Nothing crazy and the pictures don’t quite do the day and train ride justice but it was so much fun!! Enjoy!

Day 1, dose 1!

My inability to sleep last night had me up just after 4am, my mind racing with things that I could do. After trying to force myself back to sleep, I decided to tackle my list and spent the next few hours accomplishing many of the activities for the day. Mostly computer work, I zoned out in the living room to try and get a little ahead of the paperwork, appointments and shuffle of this diagnosis. 

A little after 7am, I ventured back into the bedroom. The sun was just over the horizon, streaming in through the bright half circle window above our bedroom window. My sweet husband and our little man were snuggled together, inseparable in the morning light. I stood over them for a while; careful not to wake them and yet so conscious of that very moment in time. I know it is fleeting but it is mine. They will never be that old or that young again. They will never be quite so innocent and yet completely niave. I will hold the moment – and them – dear, always.

This morning I took my first dose of Xeloda after a breakfast of fresh fruits. I’m washing it down with a fresh juice, courtesy of last night’s meal prep assistance. I don’t know what the effects will be but I am optimistic and feel that this medicine will help kick my cancer to the side for now. That is my prayer today.

Much love, friends. Enjoy every moment and spread the love, always.

Juice time!!!

I am a blessed woman for sure. Tonight, Seema showed up (the amazing chick who created the Red Phoenix logo, little man’s mural and also happens to be my dear, sweet friend). All of my incredible work people rallied together and hooked me up with all of these awesome fruits, veggies and goodies!!! How fabulous is that?!

She lent me her juicer and helped show me and the hubby how to make fresh juice! Such a fun way to spend the evening and meal prep. Love all my work people SO MUCH!!!

Some updates and a question, please…

My chemo pills are set to arrive today by mail. I will take 4 pills, twice per day with breakfast and dinner. I am debating on beginning tomorrow and starting the day with them, rather than half a day today. I will do 2 weeks on and 1 week off indefinitely. Not sure of the effects for me just yet but time will tell and I am optimistic! 

The radiation machine is down so I have not yet begun. I will call today to check on the status. As of now, the plan is to hit my lymph nodes (center chest, right axillary, neck and clavicle) with radiation for about 4 weeks. We will reassess as needed. If the pills are not working systemically against my disease, then we will also redirect to hit my chest skin as needed. I’ll see her weekly so I am confident that she has it under control.

I will see the neurosurgeon in about a week to have my stitches removed and to discuss radiation directed at my head, where my surgery was. More to come, but for now I continue to heal. They are doing a biopsy on what was removed and I am awaiting the results. I will have repeat head CT and PET in about a month. I will continue those regularly forever to track possible progression. I am unable to have an MRI due to tissue expanders. More to come on that in the future.

I am currently being treated where I have been, however I am in the process of obtaining appointments elsewhere as well. MD Anderson in TX won’t see me unless my current regimen is not working. I will take this as a good thing! Hopefully they won’t be needed. πŸ˜‰  I have tentative appointments in August with Moffitt, Sloan Kettering and Emory. I also have calls out to Johns Hopkins, Mayo and Dana Farber. What I anticipate, is that each center will likely tell me to continue my current course of treatment and to contact them if needed. I also suspect that they will discuss any potential clinical trials for me. I am hopeful!

I am personally beginning a regimen of detoxification for my body. I have been focused on non-GMO, no preservatives in the past but I am stepping that up a bit. I will be eating a diet of primarily fruits and veggies. I will also seek out a nutritionist to ensure I cover all vitamins and minerals. I am determined! My family is forever a top priority and while they will assist and support me in full, I expect them to eat as organic and natural as they have been. πŸ’š

From this point forward, I will never be cured. What I will be – with God’s good grace – is NED or No Evidence of Disease. We will hopefully get a handle on this disease and allow me to live my life while it lays dormant. Yes, this is scary. Terrifying, really. But I am determined to LIVE. I am determined to enjoy all that my family and friends have to offer. I am determined to love HARD, snuggle like crazy and laugh until my belly and cheeks hurt.

That being said, if anyone knows of any organizations that help people like myself, I’d love to hear of them. I want to set myself and my family up for success as best as possible. Wherever you are in the world, if you happen to know of a local or large organization that helps people like me, feel free to share! I will absolutely look into each and every single one. We will have a lot of travel upcoming and I don’t know what the future holds in terms of work and employment so I am grateful for all of the organizations that are available to us.

Much love, my friends. Stay strong and keep spreading the LOVE!!!

Yes, I have a scar.

And I’ve been told it’s pretty bad a$$. πŸ˜‰ Proceed with caution with the picture posted, as I don’t mean to offend.

I’ve been home since late Monday and spent most of the day yesterday resting. I was able to get a few things done around the house and was told to simmer and rest up.  πŸ˜Š  So I did! 

It’s hard to wrap my head around the fact that I had brain surgery just this past Saturday. I recognize how fortunate that I am in being able to come out of this with no defects. I will not require any physical or occupational therapy at all. Aside from a few headaches and some slight neck pain, which is to be expected, I am fine. Completely fine. I’m in awe.

I know that my road ahead is long. I will begin chemo pills (Xeloda) tomorrow when they arrive. It won’t be easy but it’s the path ahead and I am determined to prevail. I don’t know the full side effects of the drugs (in terms of how it will effect me directly) but I understand they will be different than last time. 2 weeks on chemo and 1 week off with no hair loss!! It is suspected that I’ll have stomach issues like before, with hand, feet and mouth sores. Lots of lotion, socks and mouth wash! I will be starting at a higher dose and adjusting to the side effects as needed. I would prefer to start strong and reassess to kick this cancer to the curb. I’ll start with 4 pills twice per day and see how I go. I should expect side effects in a few days.

As for radiation, I’ll start on my lymph nodes this week (hopefully) for about 4 weeks.  If the chemo pills do not destroy the cancer on my chest then we will reassess the radiation direction as needed. The chemo pills and radiation will work hand in hand together – against the cancer and with the side effects. I will feel the effects sooner, in about a week or two. We will get through it. I’ll see the neurosurgeon who performed my miraculous surgery in about a week. He will take out the stitches and I will have a consult for radiation to that area of my brain as well. I anticipate side effects but I came out strong this weekend and I am confident that I will again. In the meantime, I have a wound to be proud of.

I am sure I’m missing something but that’s all I have for now. You are always open to asking me questions – I am an open book! I am so grateful for each and every one of you in my life. I love you all and we will get through this with a smile!!!

Team Red Phoenix!!!

Monday’s update

I’m still in the hospital, though I moved out of neuro ICU yesterday and down a floor to the regular neuro surgical unit. I have NO defects, which is incredibly awesome!  Some headaches and neck pain from surgery but that is to be expected. No balance issues, no impairments and no coordination issues. To say this is amazing would be an understatement. Everyone is shocked and excited! I won’t even need any physical or occupational therapy! 

The nurses and staff have been wonderful. Having family and friends by my side has been priceless. Thank you all for your continued love, support and prayers. Hopefully I will go home tomorrow to rest prior to staying chemo/radiation. Love to you all! 

Team Red Phoenix!!!