It's been some time since my last post.
New battles to fight once in a while; some related to the disease, some collateral damage from the treatment, some just finding out who I am again.
My first fat grafting procedure has come and gone. For those who aren't breast cancer treatment and reconstruction scholars, fat grafting is essentially harvesting fat from other parts of the body, "washing" it and using it to create what may be missing. The procedure can be employed to address scarring on any part of the body, breast reconstruction, etc.
Dr. Holding told me I would leave the hospital feeling like I'd been beaten with a baseball bat.
She was right. It was, by far, the most painful recovery from any surgery thus far. And the bruising... holy cow. I have pictures (thousands thus far) but they are pretty awful looking. As always, email or message me and I'd be happy to share them if you are fighting the fight, choosing from reconstruction options, etc. I had some pretty intense pain for about 2 days after I went home but once I was up and moving around, it faded quickly. I've determined at this point, my body recovers rapidly and my tolerance for pain is pretty high. I initially felt compelled to take the "standard" recovery time indicated by my doctors. However, a lesson I quickly learned about myself is that sitting around "healing" only sent me spinning into a depression that I didn't understand. When I felt well enough to be serving others at school- that's where I needed to be. I had fat grafting done on a Thursday and was back at school on Monday.
My next procedure is at the end of October. I'm looking forward to it as it gets me one step closer to being "done". Like a pie or turkey I suppose. 😂
The most recent physical battle started one day out of nowhere. No notice, no warning. Pain in my chest, difficulty taking a deep breath, sleeping was near impossible. I called my oncologist who asked to see me. After my second appt trying to figure it out, he sent me for a CT. I knew in my heart it wasn't Cancer. Something felt "broken" or "torn" or something. The CT was essentially to rule out the presence of Cancer but it would also examine all structures in my chest. Sure enough: displaced fracture of rib number 2. Most of you know that there is no good treatment for broken ribs. The rib I had broken is far up into my chest and a result of weakened bones; the effect radiation has had on my left side (bones, organs, skin, etc.). Doctor said I could've sneezed and broken it; broken it in my sleep even. Hmmm... ok. "Is there anything I can be doing or taking to strengthen my bones?" "No". Hmmmm....
What is a displaced fracture of rib 2?
That was several weeks ago and sleeping is still hard; still hurts to sneeze or cough and God help me if I get the hiccups!!! But it is getting a little better each day.
A less obvious mountain ahead of me is the one I have to climb slowly and carefully. On the other side is a life that feels like it's mine again. As of today, I feel more like myself then I have in 2 years. But I still have to fight for that feeling from the time I wake up until the time I fall asleep at night.
Someday I hope that the people I love reach a place of understanding what Cancer is and does to those who fight it; because they fight for their lives... and if they win, they then fight daily for a real life; one without fear; one with healthy boundaries instead of walls; one that is balanced; one that doesn't involve that thought that is constant in the back of my mind, "how long... before it comes back?".
But no one really seems to understand. I'm cancer free... so I should be whole, back to the old me, thrilled to be alive so spending every moment in church or ministry, spending less time at work and pouring over relationships.
Maybe I'll get there. Maybe I won't.
But I know I have to win back parts of my life a little at a time. I want to be a good mom; a mom with energy; a mom who can schedule things because the appts are further apart now and don't involve the poison that both stole and gave life; a mom that can remember what my kids say to me for longer than 5 minutes. They are worthy of so much. And for a long time, I feel like I had so little to give. But they are why I endured the pure hell of chemotherapy.
Landen worries. A lot. He is routinely asking me how I feel. I cough and I can see a look of concern as he rushes to my side. I pray God gives him peace in his heart about my truly being well. Now, when he asks how I am I simply tell him the truth: I'm 10 feet tall, and bulletproof.
My job is one of a handful of reasons I did not withdraw into myself during treatment. I may have been less than who I wanted to be but the 500 little souls that I tried my best to serve well each day gave me a reason to get up, even when I felt awful. My teachers made me smile and loved on me like the amazing people they are.
I am starting to feel capable again; adequate; decent at my job. But I have a long way to go. And it's a daily fight... to reclaim my brain, my focus, my ability to multitask and be fully present in a conversation. But I'm getting there.
The body that exists under my clothes is quite another thing to get used to. It is a work I progress though and the second I feel myself getting used to it, it's time for another procedure. I am not bothered by the scars. There's a part of me that likes them as they remind me that the past two years haven't been a nightmare; they've been real. A real, true dealing with the devil himself. And the proof that I fought is in the scars. The proof that I won is alive with each beat of my heart. I am not afraid of death still. And had it not been for my children, I am sure now that I would have allowed Jesus to take me home. But there is still work to be done here for me. I will go when He tells me to but not a day before. In the meantime, I remain in the fight for a real life. And this one may take a bit more time. But like the battles of the past, I plan to win this one as well, one day at a time.
Current theme song HERE.
Until next time...
Sunday, September 17, 2017
Monday, July 17, 2017
Hills and Valleys
One thing I've realized over the past 40 years is that God is good regardless of whether I find myself on a hill experiencing His favor, promotion, prosperity or whether I find myself in the midst of a valley, where it's so easy to feel alone and scared, when things are happening that I would opt out of if I could.
He is good. Always. Unlike earthly fathers who, though they likely try very hard, His decisions are not impulsive; His frustration with us and our rebellion doesn't effect His desire to be as close to us as we will allow. Isn't that amazing? Awe inspiring? I think so.
When I learned this morning that my CT scan simply reflected a lovely little hernia, to say I was relieved is an understatement.
I know He would've seen me through it. I have no doubt. But in my flesh I was really struggling with how I would manage another extension of this disease. The idea of more chemo, more surgeries than I already have on the schedule, the additional strain on my boys who are still grappling with the fear and worry that Cancer can bring. I just didn't know how I was going to do it.
In my situation, it may never be over. I have been blessed to know women now that fight to stay alive for years based on what Cancer and related treatments can do to your body. But they know their enemy and most are fighting one at a time. Armies are weakened when divided to defend multiple attacks from all sides. To have thrown another enemy into the mix at this point, if I'm being brutally honest, would have been devastating. And even as I write this I am smiling at the fact that My Father knows me, inside and out, down to knowing the number of hairs on my head! (Which is a much bigger number these days than in recent months) Yes. He could've allowed the results to be different. But He didn't and I am so very grateful... for this hilltop moment; for His favor; for His love and grace; for His perfect knowledge, timing and perspective.
How could I keep from celebrating Him??
I dunno.
I don't wanna know.
He's just awesome.
He is good. Always. Unlike earthly fathers who, though they likely try very hard, His decisions are not impulsive; His frustration with us and our rebellion doesn't effect His desire to be as close to us as we will allow. Isn't that amazing? Awe inspiring? I think so.
When I learned this morning that my CT scan simply reflected a lovely little hernia, to say I was relieved is an understatement.
I know He would've seen me through it. I have no doubt. But in my flesh I was really struggling with how I would manage another extension of this disease. The idea of more chemo, more surgeries than I already have on the schedule, the additional strain on my boys who are still grappling with the fear and worry that Cancer can bring. I just didn't know how I was going to do it.
In my situation, it may never be over. I have been blessed to know women now that fight to stay alive for years based on what Cancer and related treatments can do to your body. But they know their enemy and most are fighting one at a time. Armies are weakened when divided to defend multiple attacks from all sides. To have thrown another enemy into the mix at this point, if I'm being brutally honest, would have been devastating. And even as I write this I am smiling at the fact that My Father knows me, inside and out, down to knowing the number of hairs on my head! (Which is a much bigger number these days than in recent months) Yes. He could've allowed the results to be different. But He didn't and I am so very grateful... for this hilltop moment; for His favor; for His love and grace; for His perfect knowledge, timing and perspective.
How could I keep from celebrating Him??
I dunno.
I don't wanna know.
He's just awesome.
Sunday, July 16, 2017
Something else.
Battling the Bulge.
Funny title but rooted in the... unfunny.
Since my initial reconstruction (January of this year) surgery I've had a little "bulge" in my belly on my lower right side.
At first, Dr. Holding thought it was something she needed to fix cosmetically. But then, after my second surgery, the bulge is only more defined, and growing.
At my last follow up appointment, Holding ordered a CT scan. Differential diagnosis: hernia, seroma (swelling and infection occurring post surgery) which could make sense but these days are usually very avoidable with the use of antibiotics and post surgery care. Other options include intestinal obstruction...... and lymphoma or other forms of cancer some of which can be "common" in those who've endured powerful chemotherapy.
CT took place this past Saturday. 2 gallons of contrast (slight exaggeration) to drink before hand. Iodine contrast through my port during the procedure. If you've never had a CT with contrast, when they start the contrast into the IV, you feel like your body is super warm, and as it works it's way through your body, you would bet your life that you are peeing all over yourself and the table.
If you're post menopausal and hot flashes come and go as they please, should one occur as the iodine is pushed... you will feel like you're being burned alive. Just a heads up. Unpleasant. But thankfully short lived experience. Thank you Jesus for seeing me through it and so much more in the past 2 years.
If you know me at all... if I can see the pictures they take... I WANT TO!
I've learned that I need only request a copy and they provide it right then. So I left KU with a DVD of my images.
Now I was pre-Med in college (for about 6 months)... but I am not equipped to read and interpret a CT. But much of my alone time yesterday was spent comparing my pictures to images of normal CT scans I found online.
What I can see... is a big solid something that is not supposed to be there. Based on its location, it could be a super inflammed, really out of whack ascending colon (the first part of your large intestine that makes the initial connection to the small intestine) which can occur post surgery or post chemo as both do a number on your body or a mass...maybe an extension of another organ that's wonky and big enough lately to be pushing other structures out of the way, or something else... undefined.
If you're a person of prayer, please join me in petitioning Heaven for this to be something simple or nothing at all. I know Jesus can say the word and this thing could simply disappear (feel free to pray that direction as well!), but at minimum, I would love for the remedy to be non-surgical and/or for it to NOT involve additional chemo therapy.
I'm praying to have answers to my questions tomorrow once the radiology department has read the images and sends the report to Kahn and Holding. I will update you with another post (and hopefully great news) as soon as I know more.
Word of the day: HOPE.
Current theme song you ask?
Stand by Rascal Flatts
Until next time.....
Funny title but rooted in the... unfunny.
Since my initial reconstruction (January of this year) surgery I've had a little "bulge" in my belly on my lower right side.
At first, Dr. Holding thought it was something she needed to fix cosmetically. But then, after my second surgery, the bulge is only more defined, and growing.
At my last follow up appointment, Holding ordered a CT scan. Differential diagnosis: hernia, seroma (swelling and infection occurring post surgery) which could make sense but these days are usually very avoidable with the use of antibiotics and post surgery care. Other options include intestinal obstruction...... and lymphoma or other forms of cancer some of which can be "common" in those who've endured powerful chemotherapy.
CT took place this past Saturday. 2 gallons of contrast (slight exaggeration) to drink before hand. Iodine contrast through my port during the procedure. If you've never had a CT with contrast, when they start the contrast into the IV, you feel like your body is super warm, and as it works it's way through your body, you would bet your life that you are peeing all over yourself and the table.
If you're post menopausal and hot flashes come and go as they please, should one occur as the iodine is pushed... you will feel like you're being burned alive. Just a heads up. Unpleasant. But thankfully short lived experience. Thank you Jesus for seeing me through it and so much more in the past 2 years.
If you know me at all... if I can see the pictures they take... I WANT TO!
I've learned that I need only request a copy and they provide it right then. So I left KU with a DVD of my images.
Now I was pre-Med in college (for about 6 months)... but I am not equipped to read and interpret a CT. But much of my alone time yesterday was spent comparing my pictures to images of normal CT scans I found online.
What I can see... is a big solid something that is not supposed to be there. Based on its location, it could be a super inflammed, really out of whack ascending colon (the first part of your large intestine that makes the initial connection to the small intestine) which can occur post surgery or post chemo as both do a number on your body or a mass...maybe an extension of another organ that's wonky and big enough lately to be pushing other structures out of the way, or something else... undefined.
If you're a person of prayer, please join me in petitioning Heaven for this to be something simple or nothing at all. I know Jesus can say the word and this thing could simply disappear (feel free to pray that direction as well!), but at minimum, I would love for the remedy to be non-surgical and/or for it to NOT involve additional chemo therapy.
I'm praying to have answers to my questions tomorrow once the radiology department has read the images and sends the report to Kahn and Holding. I will update you with another post (and hopefully great news) as soon as I know more.
Word of the day: HOPE.
Current theme song you ask?
Stand by Rascal Flatts
Until next time.....
Monday, May 29, 2017
Fear and Fire
This is "Fearless Girl". I've posted about this sculpture before.
Look at her.
Take it in.
In front of her: what seems to the world to be an insurmountable obstacle; one hell bent on destroying her.
Yet she doesn't just stand there. She makes a statement with her boldness. Hands on her hips. Head held high. Leaning...as if she may even be about to take a step TOWARD the bull. She leans in toward the danger.
Fearless.
I want to be fearless.
I want to NOT be afraid of the what the world is offering.
I want to NOT be afraid of the Cancer monster.
I want to NOT be afraid of or succumb to the pain of a broken heart.
And even as I speak the truth over myself and my children; the truth that I have not been given a spirit of fear, but one of power, love and self discipline (2 Timothy 1:7), I still fight a daily battle with fear.
Faith over fear!
YES but how?
I meditate on the Word. I am digging into this love letter from my Savior to me with all my might these days. And yet I still feel myself cower... shrink in response to the pain, the worry...the fear.
My eyes are perpetually swollen from the tears. My head hurts constantly. When my boys aren't around, I feel like my most important task...is to just keep breathing. Just take a breath, Amber. Let it out. Then another. Simple goals. When they ARE with me: breathing and pretending like I've got it all completely held together.
I am a Jesus lover. I love Him because He's worthy. Even if He never did anything ever again to help me, provide for me, heal me, He would STILL be worthy of my love and devotion. And I know He could take this fear of mine. Because He can do anything. But I also know that He uses the battles I fight, regardless of what they are... to teach me.
Don't we do this for our own children? I save my boys from struggle...but not all the time. Sometimes, I realize that they need to endure. I allow them to struggle knowing that the pain of that struggle will grow them; make them stronger; develop them into stronger young men. And when they cry out, I don't always rescue them. Sometimes I lean in close, hold them for a moment and whisper what they know to be true...."I'm here my love. And I will always be. But you can do this".
Meet Bonfire (Bonnie). Her litter was named with Fire being the theme. (ex. Camp Fire, Bonfire, etc.) She is the newest member of the Miller family.
I had been considering getting another dog. And I love the idea of rescuing a dog from a shelter. But I was the one needing rescued this time.
I knew she was supposed to be mine from the moment I spoke with her breeder. She is kind, loving and gentle, yet will defend her family with her life should anyone make the mistake of trying to hurt us. She and I have been a pair since we met. She follows me everywhere. She's always checking on me. If she strays further from me than she's comfortable with outside, she is quick to run back and touch me or walk with me for a second before continuing to explore the yard.
I prayed that she would be willing to take on the crucial work of healing broken hearts and restoring a sense of security.
She began her work immediately.
Last night before bed, my oldest son hugs me and says "Mom, I know Bonnie would never bite us, but I already feel so safe with her around!" It was her first night with us. The same night that she hopped up in bed with me, and didn't budge. I know she got hot because I woke up to her panting at one point, but she wouldn't/didn't leave my side.
She was meant for us, and us for her. I couldn't be more grateful for her presence in our lives.
It's amazing how Jesus works. I AM crying out. Begging to be rescued. Praying for relief.
He has not taken my struggle. He is clearly allowing me to grapple with the pain and fear for a purpose. But maybe Bonnie is His way of whispering to His daughter: "I'm here, my love. And will always be. But you can do this".
Until next time.....
Sunday, April 23, 2017
Cancer free. Now what?
Hello again and my apologies for my absence from this forum.
Life after Cancer can be a busy one. I suspect it is very different for each survivor. For me it has involved getting into a routine that includes all of the treatments and blood work that will be a part of life for years but it's also involved the exciting yet somewhat scary process of replacing what Cancer took from me.
The hair is growing back! It's short and SO MUCH SHORTER than I would ever wish my hair to be... BUT it IS THERE and for that, I am certainly grateful!
But my body was forever changed in the process of taking measures that would save my life.
Have I mentioned how much I LOVE my plastic surgeon these days?? She was amazing when she shared my mastectomy surgery with Dr. Wagner by saving my skin, minimizing scars and positioning me to the greatest extent possible for the reconstructive process. But these days.... as we begin to move through reconstruction... she's my FAVORITE!! I joke and say I feel a bit like Frankenstein these days... but the before and after pics of her work have made me a believer and I know that my hopes for a whole, post Cancer body are in good hands with her.
Dr. Julie Holding, my friends, is amazing.
Before moving on: if you are a reader of this blog, and are dealing with Cancer or know someone who is, please know that there is still much I don't share in this setting. There are celebrations and pain, joy and sadness, and a ton of pictures and video that are simply not appropriate for me to share here. But to be clear, I have no secrets. If someone out there could gain a friend, a sympathetic ear, a sounding board, some advice or just some questions answered by emailing me, sending me a DM on Twitter or messaging me on FB, etc. PLEASE DO or tell your friend to! I have shared all of this because I am compelled to. God wastes NOTHING and no tear I've shed, the pain, the setbacks, none of it will be for nothing... as long as I allow Him to use it how He sees fit. If I help, support, love on one person who finds this blog useful, then I have done what I'm supposed to.
My body has seen many changes as I've stated above. But my brain has been impacted as well. I HATE to even type those words as I've depended on myself, my "with-it-ness", my problem solving skills, my word-smithing, etc., to protect and provide for my family for... ever. In many ways I feel even more like myself than I was before my diagnosis; more connected with my Creator, more comfortable in my skin, more secure in my priorities, etc. But there are certainly things about me that are not the same, and according to the research I've done, may not be for years.... or may never be.
Cancer and chemo: short and long term effects on the brain
It seems only as I emerge out of the very distinct "fog" that came with chemo am I realizing that there are lingering effects on my memory, focus and concentration. They are things that others may not even notice, but they are stark and at times, alarming to me. Anyone who knows me knows: I have RARELY been at a loss for words, I can find a way to put language to almost anything at anytime. I love language and words. I love the way words can make a moment that seems indescribable come alive and thus able to be shared with those who didn't get to experience it. But there have been times in recent days, when I have legitimately struggled to find the word I want to use in a particular sentence. And each time, as that conversation comes to a close and the person I'm speaking with leaves the room, I am left feeling a sense of loss. It's difficult to describe, but it's like I've lost a part of me, and I'd be lying if I said it hasn't shaken my confidence a bit.
I don't feel like I can't do my job. I don't feel like I can't parent my children or navigate relationships. But I'm just not the same me. And I don't know if I ever will be.
I could be ashamed. Embarrassed. Try to cover up and hide this new wrinkle in my life. But I refuse to be ashamed. I refuse to be embarrassed. And I will never hide the battles I fight with this disease and it's lingering effects. Because the second I decide to do that, is the second that someone else withdraws from conversations, doesn't go to the party, becomes someone they're not because of these small but significant, potentially life altering effects of a fight for her life. And I will not do that. Not to myself and not to her. This is simply another battle and I will pick up my sword and shield and fight.
Until next time.....
Life after Cancer can be a busy one. I suspect it is very different for each survivor. For me it has involved getting into a routine that includes all of the treatments and blood work that will be a part of life for years but it's also involved the exciting yet somewhat scary process of replacing what Cancer took from me.
The hair is growing back! It's short and SO MUCH SHORTER than I would ever wish my hair to be... BUT it IS THERE and for that, I am certainly grateful!
But my body was forever changed in the process of taking measures that would save my life.
Have I mentioned how much I LOVE my plastic surgeon these days?? She was amazing when she shared my mastectomy surgery with Dr. Wagner by saving my skin, minimizing scars and positioning me to the greatest extent possible for the reconstructive process. But these days.... as we begin to move through reconstruction... she's my FAVORITE!! I joke and say I feel a bit like Frankenstein these days... but the before and after pics of her work have made me a believer and I know that my hopes for a whole, post Cancer body are in good hands with her.
Dr. Julie Holding, my friends, is amazing.
Before moving on: if you are a reader of this blog, and are dealing with Cancer or know someone who is, please know that there is still much I don't share in this setting. There are celebrations and pain, joy and sadness, and a ton of pictures and video that are simply not appropriate for me to share here. But to be clear, I have no secrets. If someone out there could gain a friend, a sympathetic ear, a sounding board, some advice or just some questions answered by emailing me, sending me a DM on Twitter or messaging me on FB, etc. PLEASE DO or tell your friend to! I have shared all of this because I am compelled to. God wastes NOTHING and no tear I've shed, the pain, the setbacks, none of it will be for nothing... as long as I allow Him to use it how He sees fit. If I help, support, love on one person who finds this blog useful, then I have done what I'm supposed to.
My body has seen many changes as I've stated above. But my brain has been impacted as well. I HATE to even type those words as I've depended on myself, my "with-it-ness", my problem solving skills, my word-smithing, etc., to protect and provide for my family for... ever. In many ways I feel even more like myself than I was before my diagnosis; more connected with my Creator, more comfortable in my skin, more secure in my priorities, etc. But there are certainly things about me that are not the same, and according to the research I've done, may not be for years.... or may never be.
Cancer and chemo: short and long term effects on the brain
It seems only as I emerge out of the very distinct "fog" that came with chemo am I realizing that there are lingering effects on my memory, focus and concentration. They are things that others may not even notice, but they are stark and at times, alarming to me. Anyone who knows me knows: I have RARELY been at a loss for words, I can find a way to put language to almost anything at anytime. I love language and words. I love the way words can make a moment that seems indescribable come alive and thus able to be shared with those who didn't get to experience it. But there have been times in recent days, when I have legitimately struggled to find the word I want to use in a particular sentence. And each time, as that conversation comes to a close and the person I'm speaking with leaves the room, I am left feeling a sense of loss. It's difficult to describe, but it's like I've lost a part of me, and I'd be lying if I said it hasn't shaken my confidence a bit.
I don't feel like I can't do my job. I don't feel like I can't parent my children or navigate relationships. But I'm just not the same me. And I don't know if I ever will be.
I could be ashamed. Embarrassed. Try to cover up and hide this new wrinkle in my life. But I refuse to be ashamed. I refuse to be embarrassed. And I will never hide the battles I fight with this disease and it's lingering effects. Because the second I decide to do that, is the second that someone else withdraws from conversations, doesn't go to the party, becomes someone they're not because of these small but significant, potentially life altering effects of a fight for her life. And I will not do that. Not to myself and not to her. This is simply another battle and I will pick up my sword and shield and fight.
Until next time.....
Saturday, January 21, 2017
Milestones. And the things 'they' don't tell you....
Radiation Appointment Video!!!
This post will be disorganized. I have a lot to say but my brain doesn't really have it any particular order. My apologies in advance!
Radiation is done. Five days a week for 6 weeks. And though, as is typical for me, I enjoyed celebrating that last treatment with Jenna and the other therapists that had taken care of me for 6 weeks, that celebration came after the tears.
I had actually miscounted. I thought I had one more treatment than the one I taped. When Jenna told me it was my last, I made her double check. It was too good to be true. And she was right. And I cried the tears that have met me at each milestone. The tears almost come with disbelief...."did I really make it through this?". The tears were the same ones that met me at the last infusion of each of my two rounds of chemo. And I rang the beast of a bell that hangs in the Radiation Oncology clinic for those who finish out their treatment plan.
It's been a few days since that last treatment and my burns continue to worsen as they warned me they would. But most of the bad ones are now on the parts of my chest that I can't feel.
Dr. Melissa Mitchell, my Radiation Oncologist and the team of Radiation Therapists who cared for me, answered my MANY questions, and dried the occasional tear.....are the best, most kind, proficient, compassionate group of people I've ever come across. They fall in line with EVERY single professional I have encountered at each appointment and treatment since my diagnosis.
On that note:
One of the most important things I do as a leader is hire well. If my bottom line is what is best for my students and families, I have to make the best possible decisions when it comes to interviewing and recommending teacher candidates for hire. Those staff members are the daily faces and smiles and hugs to our kids. THEY are the key players.
The leadership of KU Hospitals and clinics GETS IT RIGHT!!! CONSISTENTLY!
Isn't it funny how most don't hesitate to let businesses and individuals know when they get it wrong, but so rarely praise and thank them when they get it right.
KU,
Our 12 month relationship has been rocky because Cancer Sucks. As we continue this relationship, sure to span the whole of my life, I promise to let you and anyone else who will listen know just how well you do the work you do. I am amazed, so appreciative and truly blessed by you and can never sufficiently thank you for saving my life; the life of my boys' mom.
I've also attended my " End of Treatment" appointment with my Medical Oncologist.
Material covered:
-how to eat, drink, exercise, sleep to decrease my chances of recurrence.
-how to manage all the remaining meds
-when to call with 'weird' pains, lumps or bumps
Etc. Etc.
I still have monthly Zolodex injections to keep my ovaries shut down. These will occur indefinitely until I have surgery to remove them (my ovaries).
I will have Herceptin (blocks those HER-2 receptors that make Cancer cells mutate and replicate rapidly, 24/7) treatments for at least a year, possibly longer.
I will take meds to keep my adrenal glands and fats stores from converting stuff to estrogen forever.
Because when you go from having LOTS of estrogen in your body to NO estrogen, all you want to do is cry all day everyday, SO I take meds to help me feel like I don't want to cry at the drop of a hat because my hormones are so wonky.
I will always take medicine, have treatments and go to doctors to keep the cancer away. And that's ok.
Surgeries are next. More on those later.
After going through this, and making it to this point, I have learned that there are MANY things that "they" don't tell you.
I imagine this is likely because these things don't happen to everyone. ..so why bring it up right?
Things they don't tell you:
There is an actual pain (minor, nothing to be afraid of) felt as your hair dies. It's a nerve type pain, comes in waves, and is followed by massive hair loss (for me it was almost immediate, huge hand fulls of hair, the following day).
Chemo also makes your fingernails and toenails fall off. (Yeah, I know. Gross)
I have an amazing nail tech that has managed to salvage the look of my hands.... and thankfully by the time my toenails died, it was boot season. (Thank God!)
Chemo is different for everyone. My skin hurt. My gums bled. It hurt to eat, sleep, drink, walk, talk, sit. And even now, MONTHS after my last infusion, I still experience some of the side effects. But they are better each day.
Radiation is a cake walk compared to chemo but you will burn, blister and your skin will peel. It's likely the skin treated will never be the same. But it's a livable, manageable thing no matter how you look at it.
Everyone who knows you have Cancer will expect you to be miserable all the time. In a way, I appreciated this. Because on the bad days, I knew the people around me would give me the grace to be less than what is typical for me.
They DO tell you to create and lean on a support system. "Cancer sucks. But it's a lot harder to go through it alone".
They DON'T ask you if have a spiritual foundation, if you have a belief in a higher power, etc.
I am not married. I wasn't at the time of my diagnosis. I am not married now. I am a single, working mother and Breast Cancer Survivor. As much as I understand how the right husband/wife/partner might have lightened the heavy loads which were a natural part of this journey, I didn't make it through this because of those around me. I made it through this because of my God and those around me who allowed themselves to be used by God to minister to me and my family.
I pray that if NOTHING else comes of this battle, those who know me have received the message that REALLY ANYTHING; ABSOLUTELY ANYTHING is possible through Christ who strengthens us (Phil 4:13) and that ALL things (even Cancer) work together for good for those who love the Lord and are called according to His purpose. (Romans 8:28)
Yes. I HATE CANCER. But because I love a good, merciful, loving God He has enabled me to smile through it. And....
The best way to keep people guessing....like shocked.....awed. ... is to walk into and out of your treatments with a smile. Tell a joke. Laugh as much as you can; at yourself, the situation; your bald head; your butchered and burned (but LIVING) body, etc. BECAUSE CANCER SUCKS....everyone expects you to be sad, angry, sick, tired, and just plain miserable. If you choose to smile through chemo, laugh through radiation, I promise you, there will be others, whose default is sadness and tears because they are dealing with the devil, who will smile with you. I promise you. And to know that someone smiled who might otherwise not have that day because Cancer is sucking the joy from their life, is a really really good feeling.
The people you choose to surround yourself with will make or break you as you fight this battle. I have an amazing sister, a remarkable church family, fantastic friends and a school family that is unmatched: all of whom have shown me nothing but support, smiles and hugs from the start of this journey to now.
You don't have to end relationships. But to be and stay healthy emotionally AND physically, it may be necessary to choose wisely who you spend your time with. Those who need or take from you....give yourself permission to put some space between you while you get well...for your own health.
They DO tell you it's ok to be selfish and take care of yourself while getting well. This was VERY hard for me. Before the battles started I saw no reason that I would need to be selfish, or take advantage of others. But the meals brought to my house, the boys being cared for by others who loved them so I could sleep, the gift cards to restaurants so I didn't have to cook on the bad days.......
Saved me. In so many indescribable ways.
And lastly, no one warned me or even hinted at the idea that as I fought for my own life, my capacity to love others, the space in my heart for people would grow beyond what I ever thought possible. I still have my dark moments. But I have so much love in my life. I have fallen in love with life and what is possible when it is lived to its fullest.
So would I go through this again? To meet this end? This end at which I feel more love, compassion and connection with the lives around me?
Yes.
I would.
I can't believe I just wrote those words. But they. Are. True.
Until next time....
Friday, December 23, 2016
Radiation and other things.....
So I'm in my 4th week of radiation treatments.
5 days a week. Six weeks.
Though the initial parts of each of these new steps are always overwhelming, it's actually pretty amazing how it all works. I've made the radiation therapists promise me that they'll let me record the process at least once before I'm done. (which of course, I will share here).
Here's the thing about radiation. It works to kill remaining Cancer cells that may have not been killed by chemo or surgery. YES- radiation exposure does create a risk for secondary Cancers down the line but the risks are, on average, less than 1%. YES- radiation is a GOOD thing for my left chest, under my left arm, the left side of my sternum (breast bone). BUT radiation exposure to my organs (heart, lungs, esophagus, etc.) that may hang out in the same area WILL cause scar tissue that for working organs that I need for hopefully a very long while is NOT good and puts me at risk for heart and lung disease down the line.
SO.. the "set up" process was extensive. It included CT scans of my whole midsection to insure that my radiation oncologist could create a treatment plan that avoided those lovely, fleshy, well functioning internal organs but blasted the crap out of the areas that may have lingering Cancer cells hiding out. Part of the process was providing me with these tiny little tattoos (and I do mean tiny) that help the therapists line me up with the machine each time. When they told me I would be tattooed...I wasn't hesitant but had envisioned these big 'ole things and had requested that they at least try to make them into some type of discernible shape: a heart? a star maybe? But alas, they are so small that I can barely make them out. There is a place in the area that will remove these tiny marks for Cancer survivors for free when radiation is complete. But in truth, they are like so many of the other accumulated marks on my body from this process. They are proof that what has tried to kill me was unsuccessful. I think I'll keep 'em.
Now, when I go to treatment, I disrobe from the waist up and lay on this table. My head and neck lay on this pillow that they molded just for me during set up. My arms lay above my head and I hold onto these handles (really just to keep my hands busy and keep me from moving more than anything). The therapists move and tweak my body position to be in line with this incredible list of criteria that has to be right to make sure the beams hit the right spots. They leave me and lock me into this room built specifically for folks like me with lead walls, cameras everywhere and a painted ceiling that looks like the most perfect spring sky (a nice touch I think).
One of the coolest parts of this whole thing is this little box they tape to my stomach each time. Before each time the machine turns on to treat the designated areas, the therapists pipe into the room and tell me to take a deep breathe. When I take a deep breath, my lungs fill with air which actually squeezes my heart deeper (like deeper down toward my waist) into my chest. It's only when I am holding my breath that the machine treats the area. IF for some reason, I can't hold my breath or have to cough or something, the box moves on my stomach (obviously). The MACHINE DETECTS the movement of the box and shuts itself off to avoid hitting my heart and lungs. WHAT?? Good grief...there are so many smart people out there but I would love meet the the girl (it had to have been a girl dontcha think?) who came up with this and give her a hug or a high five.
My treatments last about 8 minutes on average. It takes me 30 minutes to get there and depending on traffic about 60 minutes to get back....but that 8 minutes....I suppose are worth the trip.
When I have asked about the best way to describe the damage done to the body with radiation exposure, the best way I can think to sum it up is that it's like a sunburn that goes so very deep and causes so much damage to the cells that the parts of the body exposed never fully recover. Effects during treatment are cumulative meaning that the first week, I felt nothing; no side effects, no skin changes, no fatigue. Now, in my fourth week, my skin is bright red, the parts of my skin that I can still feel (remember I lost almost all sensation as a result of the mastectomy) are raw and tender all the time and I am exhausted....all the time. I can't seem to get enough sleep but when I do, the mornings are good, afternoons are ok...but if I am still moving by 8 pm...it is caffeine induced movement only. By the end of my 6th week, there will likely be blisters and the overall burns will be at their worst. The tissue underneath is damaged with each treatment. If you think about how leathery the skin of habitual sun worshipers looks, that's how the tissue under my skin is becoming. It will lose much of it's elasticity, blood vessels and nerves will become encased in scar tissue and though anything is possible, it is unlikely that the damage is anything but permanent.
Radiation makes reconstruction a bit more difficult for the reasons stated above. Soft, squishy, stretchy skin is ideal for reconstruction. My left side will have none of that. BUT that's what I love about my plastic surgeon, Dr. Julie Holding. She is unphased by this. She balks at the pictures I have shown her of botched reconstruction and scolds me for looking at anything but HER work. For her confidence, cockiness, self-assurance.....whatever you want to call it, I am more grateful than I can express. I have MANY surgeries in my future, most of which will be to fix, tweak, perfect her work until I am satisfied with the result. In her words, we aren't done until I am pleased with the finished product. That could mean months or even years. And that doesn't matter to me at all. I will address reconstruction in a later post. My first major surgery is scheduled for February 27th.
Landen has struggled with radiation. I have brought both of the boys to treatments with me, shown them the room, the machine, introduced them to the staff. Logan seems to understand, in his way, that this is a necessary step to keep the Cancer from coming back. But Landen can't seem to reconcile the fact that I am getting better....when in fact I have MORE appts than ever. He has asked me several times, "Mom, are you sure you're not dying?" And we have long talks, mainly at bedtime, during which I assure him that I am NOT dying and that the hard parts of this are certainly hard, but that they won't last forever. When asked what he wants to be sure we pray about each night, he ALWAYS wants to ask God to heal me. So we pray that prayer every night and every time, he places his little hand on my head (still pretty much bald these days) as if he does understand that our human hands can be used at tools for healing when Jesus chooses to use them as such.
We are all dealing with this. In the best way we know how. But I have my moments, even days when I struggle with frustration and anger inside me. I want my life back! I want a life that doesn't revolve around Cancer! I want the damage to be undone. I want my hair back. I want my energy back. I want to be able to fall asleep and stay asleep without the use of medication. I my kids to worry about NORMAL things. KID things. Not the things of Cancer and death.
I am sitting here receiving one of many Herceptin treatments (again to keep the HER-2 proteins from producing Cancer cells) I will receive FOREVER. I hear the beeping in the background. The IV tubing that has bubbles in it. The beeps that mean the bag is empty and it's time for the nurse to hang another. I say my name and date of birth a thousand times each time I come her to make sure I get the right treatment intended for me. As the herceptin goes in, the energy I had when I arrived gradually goes out. And when I leave here, I am off to the Radiation Oncology location for another treatment.
I hear the noises in my sleep. I run through the process again and again in my dreams. And I'm tired. I am so tired of being so very tired.
And yet Jesus is faithful to bring a relevant component of His hand written love letter to me to my mind every single time I feel this way:
1 Peter 1:3-9
Praise to God for a Living Hope
5 days a week. Six weeks.
Though the initial parts of each of these new steps are always overwhelming, it's actually pretty amazing how it all works. I've made the radiation therapists promise me that they'll let me record the process at least once before I'm done. (which of course, I will share here).
Here's the thing about radiation. It works to kill remaining Cancer cells that may have not been killed by chemo or surgery. YES- radiation exposure does create a risk for secondary Cancers down the line but the risks are, on average, less than 1%. YES- radiation is a GOOD thing for my left chest, under my left arm, the left side of my sternum (breast bone). BUT radiation exposure to my organs (heart, lungs, esophagus, etc.) that may hang out in the same area WILL cause scar tissue that for working organs that I need for hopefully a very long while is NOT good and puts me at risk for heart and lung disease down the line.
SO.. the "set up" process was extensive. It included CT scans of my whole midsection to insure that my radiation oncologist could create a treatment plan that avoided those lovely, fleshy, well functioning internal organs but blasted the crap out of the areas that may have lingering Cancer cells hiding out. Part of the process was providing me with these tiny little tattoos (and I do mean tiny) that help the therapists line me up with the machine each time. When they told me I would be tattooed...I wasn't hesitant but had envisioned these big 'ole things and had requested that they at least try to make them into some type of discernible shape: a heart? a star maybe? But alas, they are so small that I can barely make them out. There is a place in the area that will remove these tiny marks for Cancer survivors for free when radiation is complete. But in truth, they are like so many of the other accumulated marks on my body from this process. They are proof that what has tried to kill me was unsuccessful. I think I'll keep 'em.
Now, when I go to treatment, I disrobe from the waist up and lay on this table. My head and neck lay on this pillow that they molded just for me during set up. My arms lay above my head and I hold onto these handles (really just to keep my hands busy and keep me from moving more than anything). The therapists move and tweak my body position to be in line with this incredible list of criteria that has to be right to make sure the beams hit the right spots. They leave me and lock me into this room built specifically for folks like me with lead walls, cameras everywhere and a painted ceiling that looks like the most perfect spring sky (a nice touch I think).
One of the coolest parts of this whole thing is this little box they tape to my stomach each time. Before each time the machine turns on to treat the designated areas, the therapists pipe into the room and tell me to take a deep breathe. When I take a deep breath, my lungs fill with air which actually squeezes my heart deeper (like deeper down toward my waist) into my chest. It's only when I am holding my breath that the machine treats the area. IF for some reason, I can't hold my breath or have to cough or something, the box moves on my stomach (obviously). The MACHINE DETECTS the movement of the box and shuts itself off to avoid hitting my heart and lungs. WHAT?? Good grief...there are so many smart people out there but I would love meet the the girl (it had to have been a girl dontcha think?) who came up with this and give her a hug or a high five.
My treatments last about 8 minutes on average. It takes me 30 minutes to get there and depending on traffic about 60 minutes to get back....but that 8 minutes....I suppose are worth the trip.
When I have asked about the best way to describe the damage done to the body with radiation exposure, the best way I can think to sum it up is that it's like a sunburn that goes so very deep and causes so much damage to the cells that the parts of the body exposed never fully recover. Effects during treatment are cumulative meaning that the first week, I felt nothing; no side effects, no skin changes, no fatigue. Now, in my fourth week, my skin is bright red, the parts of my skin that I can still feel (remember I lost almost all sensation as a result of the mastectomy) are raw and tender all the time and I am exhausted....all the time. I can't seem to get enough sleep but when I do, the mornings are good, afternoons are ok...but if I am still moving by 8 pm...it is caffeine induced movement only. By the end of my 6th week, there will likely be blisters and the overall burns will be at their worst. The tissue underneath is damaged with each treatment. If you think about how leathery the skin of habitual sun worshipers looks, that's how the tissue under my skin is becoming. It will lose much of it's elasticity, blood vessels and nerves will become encased in scar tissue and though anything is possible, it is unlikely that the damage is anything but permanent.
Radiation makes reconstruction a bit more difficult for the reasons stated above. Soft, squishy, stretchy skin is ideal for reconstruction. My left side will have none of that. BUT that's what I love about my plastic surgeon, Dr. Julie Holding. She is unphased by this. She balks at the pictures I have shown her of botched reconstruction and scolds me for looking at anything but HER work. For her confidence, cockiness, self-assurance.....whatever you want to call it, I am more grateful than I can express. I have MANY surgeries in my future, most of which will be to fix, tweak, perfect her work until I am satisfied with the result. In her words, we aren't done until I am pleased with the finished product. That could mean months or even years. And that doesn't matter to me at all. I will address reconstruction in a later post. My first major surgery is scheduled for February 27th.
Landen has struggled with radiation. I have brought both of the boys to treatments with me, shown them the room, the machine, introduced them to the staff. Logan seems to understand, in his way, that this is a necessary step to keep the Cancer from coming back. But Landen can't seem to reconcile the fact that I am getting better....when in fact I have MORE appts than ever. He has asked me several times, "Mom, are you sure you're not dying?" And we have long talks, mainly at bedtime, during which I assure him that I am NOT dying and that the hard parts of this are certainly hard, but that they won't last forever. When asked what he wants to be sure we pray about each night, he ALWAYS wants to ask God to heal me. So we pray that prayer every night and every time, he places his little hand on my head (still pretty much bald these days) as if he does understand that our human hands can be used at tools for healing when Jesus chooses to use them as such.
We are all dealing with this. In the best way we know how. But I have my moments, even days when I struggle with frustration and anger inside me. I want my life back! I want a life that doesn't revolve around Cancer! I want the damage to be undone. I want my hair back. I want my energy back. I want to be able to fall asleep and stay asleep without the use of medication. I my kids to worry about NORMAL things. KID things. Not the things of Cancer and death.
I am sitting here receiving one of many Herceptin treatments (again to keep the HER-2 proteins from producing Cancer cells) I will receive FOREVER. I hear the beeping in the background. The IV tubing that has bubbles in it. The beeps that mean the bag is empty and it's time for the nurse to hang another. I say my name and date of birth a thousand times each time I come her to make sure I get the right treatment intended for me. As the herceptin goes in, the energy I had when I arrived gradually goes out. And when I leave here, I am off to the Radiation Oncology location for another treatment.
I hear the noises in my sleep. I run through the process again and again in my dreams. And I'm tired. I am so tired of being so very tired.
And yet Jesus is faithful to bring a relevant component of His hand written love letter to me to my mind every single time I feel this way:
1 Peter 1:3-9
Praise to God for a Living Hope
3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, 4 and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you, 5 who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time. 6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. 8 Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, 9 for you are receiving the end result of your faith, the salvation of your souls.
He is a good Father. And even in the midst of the pain and the trials; even when I am angry and frustrated; even when I can't or won't see the light at the end of the tunnel, He loves me more than I can possible know.
Until next time.........
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