Sure I've learned holding these updates in doesn't help, though it hasn't stopped me from attempting. But in true Festivus fashion, it's time to send this one out into the abyss. After another round of scans, the results came back last Monday. Overall it's good news, my liver and lungs are great. No new growth on any secondary locations that have been treated.
The bad: I have three lymph nodes in my abdomen that have grown. At this point Dr. H feels like we're on the chase, and would like to see if we can get ahead. In January, I'll be going to Emory Winship Cancer Institute to see if they have any innovative treatments/clinical trials that I can join. This means it's likely I'll be back on chemo next year.
There it is.
The abyss.
I don't think I've fully processed the news. In all honesty there are so many other things I'm mentally processing, the chemo prospect isn't as upsetting as other dreams cancer has effectively ended. I plan. I prepare. I don't do unexpected. So while I celebrated the end of chemo, I knew it was likely I would start another cycle of the spider juice.
You run into a lot of people prefer you go into scans with expectations of an all clear, as if that is going to stop cancer. Look. No one respects the power of words more than myself, but if I didn't have this mindset, I'm pretty sure I'd turn into the weird lady that that talks to herself and pets the carpet. For those managing chronic illness, everyone manages stress and anxiety differently so do what works best for you!
It took everything we had to manage a chemo routine locally. I could feel the stress radiate off Fred as he processed the prospect of having to get me to/from Emory University once (possibly twice) a week. And I can't help but feel at fault. I am the burden. He would never say that, but I know. This is the evil side of having been a caregiver and now the patient. I wouldn't have called caring for Daddy a burden either; but when he passed, people could physically see a weight had been lifted. So I know...there's a weight there. I am that weight.
Going forward, nothing is official until we meet with Emory. And you guys know how I feel about Emory, or the prospect of another hospital stay at Emory. If this meeting doesn't go well, there's a chance we'll get a second opinion at MD Anderson Piedmont. The only reason we're going to Emory first is because they already have my medical records.
Much is up in the air, but I'm going to try to get ahead and as prepared as possible. Most pressing I will need help getting to/from treatments and appointments. For everyone that's asked how they can help, this will be our greatest need this cycle. If you would be available for transportation (even if for only a day or 1-way), send me a Facebook PM. I'll probably create a private FB group to keep everyone updated and organized. We are located in Peachtree Corners and anticipating treatment will be Emory University or **fingers crossed** Emory John's Creek. We generally try to schedule treatment Monday/Tuesday because that guarantees I'll have one good weekend.
Prayers: Guide this new doctor to the right treatment. If clinical trial, pray there is an open spot. If chemo, pray the infusion can be completed at Emory John's Creek. Pray for my volunteers. This chemo thing can be overwhelming, so give them peace and strength to manage me (I'm a handful). Pray for Fred. When there is crazy at work and home, there is little refuge. Give him strength and an outlet to find peace.
Note: This has not changed our plans to attend 2017 Call on Congress. They are extremely cognizant that some of their attendees are mid-treatment or just completed treatment, and will work around my needs.
Friday, December 23, 2016
Thursday, December 15, 2016
Punk Kid Going to D.C. Part II
Thrilled to announce, after less than 24 hours, we have already been able to close our funding page! Another pair of angels stepped in and offered to cover our remaining expenses. And once again, I'm a blubbering fool. Fred and I are both floored by your generosity, and we pray your kindness will be returned ten fold!
Years ago, when my dad was diagnosed, I quickly joined the "eff" cancer bandwagon. I was scared. And angry. And it felt right to curse its existence. I was only looking at the long list of negatives that followed cancer.
Eventually I learned in order to truly beat cancer, we would need to rise above. I was determined to find and focus all my energy on the beautiful things we experienced because of cancer. And the memories we were able to make with Daddy, far outweighed the nasty cancer stuff. In spite of all the tears and pain of my own cancer diagnosis, the beauty continue to surpass the ugliness of cancer!
How can I curse this experience?! This level of God. So when you are tempted to let loose a "eff" cancer, take pause. There is good there! And if you can't find any, give me a call. Because this...the kindness and generosity of family and friends and strangers, this isn't "eff" cancer THIS is us kicking cancer butt!
Years ago, when my dad was diagnosed, I quickly joined the "eff" cancer bandwagon. I was scared. And angry. And it felt right to curse its existence. I was only looking at the long list of negatives that followed cancer.
Eventually I learned in order to truly beat cancer, we would need to rise above. I was determined to find and focus all my energy on the beautiful things we experienced because of cancer. And the memories we were able to make with Daddy, far outweighed the nasty cancer stuff. In spite of all the tears and pain of my own cancer diagnosis, the beauty continue to surpass the ugliness of cancer!
How can I curse this experience?! This level of God. So when you are tempted to let loose a "eff" cancer, take pause. There is good there! And if you can't find any, give me a call. Because this...the kindness and generosity of family and friends and strangers, this isn't "eff" cancer THIS is us kicking cancer butt!
Wednesday, December 14, 2016
Punk Kid Going to D.C.
Beyond excited to announce, on December 7th, I opened an email letting me know I was selected as a 2017 Call-on Congress Scholar! They had over 50 applicants, and I was one of 16 selected "...because we were so compelled by your story and your passion for advocacy." And I just wanted to scream: See Daddy, I'm telling our story!!! And I don't do small, we're going to Capitol Hill!
In March, I will be going to D.C. to learn how to be a Colon Cancer advocate. Then newly armed with that knowledge, we'll visit Capitol Hill to speak with our legislators. My goal is to work towards changing the perception that colon cancer is an "old man's" cancer, and fight for earlier screening.
We will need help covering the cost of miscellaneous travel fees, so we've setup a YouCaring page for those that wish to donate. Go here.
In March, I will be going to D.C. to learn how to be a Colon Cancer advocate. Then newly armed with that knowledge, we'll visit Capitol Hill to speak with our legislators. My goal is to work towards changing the perception that colon cancer is an "old man's" cancer, and fight for earlier screening.
We will need help covering the cost of miscellaneous travel fees, so we've setup a YouCaring page for those that wish to donate. Go here.
Thursday, November 10, 2016
Lesson N9.16: Don't Be A Heather
Note: This is not a post about my health. I promise not to abuse this blog and turn it into something it's not, but this one is far too important.
Preface: We have lived in the same neighborhood for nearly 10 years. While generally known for having a higher latino population, we love it for its racial diversity and mix of low income to upper middle class. In those ten years, I can count the number of times I've seen a rebel flag on one hand.
Yesterday the grocery store was unusually busy. Half the carts were in use kind of busy. A lady was kind enough to offer her cart as she left, I smiled and thanked her but her face remained blank. As I walked through, I began to notice nearly every minority looked as though there was a death in the family. The cashier didn't offer the usual "did you find everything okay," and looked physically pained to smile. This was all so far beyond my typical shopping experience.
As I exited, a jacked up truck with massive tires and a rebel flag rear window was obnoxiously revving his engine impatiently waiting for pedestrians to cross. I looked around and saw stoic faces, I was the only person giving the "who tooted" face. I was the only white person.
It was as though it was expected. As though they had feared this election outcome would give voice to a very small population of bigots, and in that moment that fear was being realized. I desperately wanted to hug each person.
But I shut down.
My heart ached.
I left the parking lot in tears.
Yesterday I couldn't wrap my head around what I had witnessed. I refused to believe it was racially motivated. But those fellow shoppers were hurting, no matter the truck driver's intention the impact was clear. I regret not offering a hug. I deeply regret not voicing words of encouragement. Or at least a, "what's up Cleatus' butt!?" Something. Anything to shift the energy in that moment.
Yesterday I failed.
I walked away.
My silence made me an accomplice.
I became the problem.
Friends. Don't be me. Don't be complacent. Don't stand by as one person's actions cause another heartache. This isn't Republican vs Democrat thing. This is a love thing.
Choose love!
I'm calling myself out.
I'm calling YOU out.
Let's hold each other accountable.
See something. Hear something. Say something. If not to the aggressor, then certainly to the one being being harassed. Be kind. Be polite. And if you can't think of anything nice, make a joke. If on Facebook, I'd go with screaming goats. If you clicked that link, you understand what I'm saying. Sometimes all it takes to shift a conversation is to make someone laugh or smile. Maybe it doesn't work, but at least you made an attempt. We owe each other that! (I promise it's a link to the goats!)
Preface: We have lived in the same neighborhood for nearly 10 years. While generally known for having a higher latino population, we love it for its racial diversity and mix of low income to upper middle class. In those ten years, I can count the number of times I've seen a rebel flag on one hand.
Yesterday the grocery store was unusually busy. Half the carts were in use kind of busy. A lady was kind enough to offer her cart as she left, I smiled and thanked her but her face remained blank. As I walked through, I began to notice nearly every minority looked as though there was a death in the family. The cashier didn't offer the usual "did you find everything okay," and looked physically pained to smile. This was all so far beyond my typical shopping experience.
As I exited, a jacked up truck with massive tires and a rebel flag rear window was obnoxiously revving his engine impatiently waiting for pedestrians to cross. I looked around and saw stoic faces, I was the only person giving the "who tooted" face. I was the only white person.
It was as though it was expected. As though they had feared this election outcome would give voice to a very small population of bigots, and in that moment that fear was being realized. I desperately wanted to hug each person.
But I shut down.
My heart ached.
I left the parking lot in tears.
Yesterday I couldn't wrap my head around what I had witnessed. I refused to believe it was racially motivated. But those fellow shoppers were hurting, no matter the truck driver's intention the impact was clear. I regret not offering a hug. I deeply regret not voicing words of encouragement. Or at least a, "what's up Cleatus' butt!?" Something. Anything to shift the energy in that moment.
Yesterday I failed.
I walked away.
My silence made me an accomplice.
I became the problem.
Friends. Don't be me. Don't be complacent. Don't stand by as one person's actions cause another heartache. This isn't Republican vs Democrat thing. This is a love thing.
Choose love!
I'm calling myself out.
I'm calling YOU out.
Let's hold each other accountable.
See something. Hear something. Say something. If not to the aggressor, then certainly to the one being being harassed. Be kind. Be polite. And if you can't think of anything nice, make a joke. If on Facebook, I'd go with screaming goats. If you clicked that link, you understand what I'm saying. Sometimes all it takes to shift a conversation is to make someone laugh or smile. Maybe it doesn't work, but at least you made an attempt. We owe each other that! (I promise it's a link to the goats!)
Friday, October 7, 2016
My Truth, Part II
Confession. I've been concealing my truth again. I've been in a mental funk for a good four months, and I think it's because I'm not being transparent. Or the super cool buzzword...authentic. We live in a FB edited world, and tend to only show the happy times as if that is real life. But, in all honesty, I wanted to give everyone a break.
Cancer is exhausting, for both the patient and their support team, and mine was an especially long journey. At the beginning when meeting new doctors they would comment on my age, that has since morphed into boy you've had a bumpy road.
After chemo everyone has the same response, "So you're done, right. It's over. You're cured!? Remission?" I've always been particularly slow at answering the last two. Because in many ways, after chemo, the real battle begins. You have a parade of people supporting you during chemo, because it's an obvious physical weakness, but you are very much alone in the scan stage. The mental strength it takes to push through that anxiety, for me, has been an incredible struggle.
At the end of May, I had my first true post-chemo scan. They noted a tiny spot on my right lung. After further testing, inactive PET/too small to biopsy, my oncologist decided on a wait-and-see approach. The scan immediately following our vacation at the end of August showed growth as well as a small spot on the left lung, and a biopsy was ordered. Though the results were not 100% definitive, because once again they didn't retrieve a large enough sample, it's likely metastasis.
So there you go...
It's back.
I knew from the start this was a possibility. While I avoid statistics, because of my dad, I am aware. It's painful. To think of yourself in terms of a percentage instead of a human being. The places your mind wonders. It's not for the faint of heart. But I also know the God that created this body is the ultimate decider, and no matter the statistics, this journey is completely out of my control. No kale diet. No aloe juice. No alkaline water. No medicine. No doctor has or ever will cure cancer.
Think about it. Right now doctors are researching and experimenting with a way to use HIV to cure some late stage cancers. That's a dumbed down version, but yeah. HIV. The disease some claimed God sent to "kill off the gays" is actually being used to save lives. The very disease that brought people to their knees asking why God would send such a terrible illness, may lead to saving far more lives than that which it has taken. Friends. If something like HIV can be made into something beautiful, think about that in terms of our own lives. With time and renewed perspective, we can make anything beautiful. Except spiders.
Going forward. Treatment will be SBRT (radiation). While others may receive daily radiation, SBRT is able to hit the lesions with multiple angles therefore receiving higher dosage requiring fewer treatments. Side effects are minimal, fatigue and possible esophageal irritation. I've already gone through the initial scan, and today I had my "world" tattoos (if you watch Friends, you know). Then, after we return from vacation, the fun starts.
So, it's time for me to warrior up.
Again.
I am
sad.
I am angry.
And, at times,
I am weak.
Very, very weak.
But never
doubt my strength.
Still smiling.
Still laughing.
Still...
and knowing.
Psalms 46:10
Cancer is exhausting, for both the patient and their support team, and mine was an especially long journey. At the beginning when meeting new doctors they would comment on my age, that has since morphed into boy you've had a bumpy road.
After chemo everyone has the same response, "So you're done, right. It's over. You're cured!? Remission?" I've always been particularly slow at answering the last two. Because in many ways, after chemo, the real battle begins. You have a parade of people supporting you during chemo, because it's an obvious physical weakness, but you are very much alone in the scan stage. The mental strength it takes to push through that anxiety, for me, has been an incredible struggle.
At the end of May, I had my first true post-chemo scan. They noted a tiny spot on my right lung. After further testing, inactive PET/too small to biopsy, my oncologist decided on a wait-and-see approach. The scan immediately following our vacation at the end of August showed growth as well as a small spot on the left lung, and a biopsy was ordered. Though the results were not 100% definitive, because once again they didn't retrieve a large enough sample, it's likely metastasis.
So there you go...
It's back.
I knew from the start this was a possibility. While I avoid statistics, because of my dad, I am aware. It's painful. To think of yourself in terms of a percentage instead of a human being. The places your mind wonders. It's not for the faint of heart. But I also know the God that created this body is the ultimate decider, and no matter the statistics, this journey is completely out of my control. No kale diet. No aloe juice. No alkaline water. No medicine. No doctor has or ever will cure cancer.
Think about it. Right now doctors are researching and experimenting with a way to use HIV to cure some late stage cancers. That's a dumbed down version, but yeah. HIV. The disease some claimed God sent to "kill off the gays" is actually being used to save lives. The very disease that brought people to their knees asking why God would send such a terrible illness, may lead to saving far more lives than that which it has taken. Friends. If something like HIV can be made into something beautiful, think about that in terms of our own lives. With time and renewed perspective, we can make anything beautiful. Except spiders.
Going forward. Treatment will be SBRT (radiation). While others may receive daily radiation, SBRT is able to hit the lesions with multiple angles therefore receiving higher dosage requiring fewer treatments. Side effects are minimal, fatigue and possible esophageal irritation. I've already gone through the initial scan, and today I had my "world" tattoos (if you watch Friends, you know). Then, after we return from vacation, the fun starts.
So, it's time for me to warrior up.
Again.
I am
sad.
I am angry.
And, at times,
I am weak.
Very, very weak.
But never
doubt my strength.
Still smiling.
Still laughing.
Still...
and knowing.
Psalms 46:10
Monday, January 4, 2016
Things 2015 Taught Me
* When someone calls me strong, occasionally, it's okay to let out a slightly conceded "yeah, I know." Because yeah, I'm one tough lady.
* When you feel super crabby, smile. Make someone laugh. Being the light in someone else's life, even when you find yourself in a dark place, is an instant mood booster. But it doesn't last long. This is pretty much why cancer requires good humor.
* The occupation "Hospitalist" is loosely translated to: weekend devil that orders crazy meds until you have no appetite just so they can then order Ensure cause they're bored and think it's funny. I said loosely...
* Asian nurses hurt. You can tell them your skin is sensitive until red in the face, but they are still going to rip that bandage off and probably take some skin for good measure.
* When the C gets dumped into your marriage, it will turn small cracks into rubble or refortify the walls. Not saying our marriage is perfect, but it has certainly proven we make one heck of a strong team.
* Attitude really is everything. Really! Positive, half full, optimistic, joyful. Those people in the infusion room talk about life. Negative, half empty, pessimistic, doubtful. They talk about their side effects. I believe words have power and we receive what we speak. If that's the case, do you want to experience more life or the side effects of living that life.
* When you feel super crabby, smile. Make someone laugh. Being the light in someone else's life, even when you find yourself in a dark place, is an instant mood booster. But it doesn't last long. This is pretty much why cancer requires good humor.
* The occupation "Hospitalist" is loosely translated to: weekend devil that orders crazy meds until you have no appetite just so they can then order Ensure cause they're bored and think it's funny. I said loosely...
* Asian nurses hurt. You can tell them your skin is sensitive until red in the face, but they are still going to rip that bandage off and probably take some skin for good measure.
* When the C gets dumped into your marriage, it will turn small cracks into rubble or refortify the walls. Not saying our marriage is perfect, but it has certainly proven we make one heck of a strong team.
* Attitude really is everything. Really! Positive, half full, optimistic, joyful. Those people in the infusion room talk about life. Negative, half empty, pessimistic, doubtful. They talk about their side effects. I believe words have power and we receive what we speak. If that's the case, do you want to experience more life or the side effects of living that life.
Lastly. I think I have previously written, somewhere, that my prayers have always been teach/grow/change and simply to experience everything. And while most may focus on the pain and what cancer or chemo may take away, or let out a eff cancer...
Here's what I know. I have been gifted the ability to experience this side of humanity. And it is an incredible experience. As someone that has prided themselves on being fiercely independent (to a fault), being offered help and humbling myself to accept my own weakness has certainly been a growing experience.
And the people I don't personally know. Some named. One anonymous. That send unexpected gifts that bring me such joy. I know this will sound strange, but it feels like a reward. I know. Calling cancer a reward, girl lost her mind! Stay with me...
Being a caregiver and loving on my dad as he exited this world, was in a word stressful. Though grateful for the time, it eats away and drains your soul. As caregiver, you are literally giving your energy to that person. And I know this because I feel Fred feeding me with his energy. You don't realize how much it takes of you until they have passed and you're suddenly left without a to-do list. I gave so much of myself, and now my cup is being refilled as people send me their love and prayers.
I mean. Basically what I'm saying is Fred better win the lottery after all of this. Because being a co-caregiver and then primary caregiver proves this man I've married is a SAINT!
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