Thursday, June 20 update

I appreciate every one's concern reaching out regarding my medical condition right now. I am beyond blessed to have such a large community concerned and praying for me and I cannot express my gratitude enough.

I may be repeating myself, so I apologize if you are hearing repeated updates. I'm doing my best to update my blog as needed or every few days. What is best for me is if you would subscribe to the blog updates so you get an immediate email when I post the blog and then I can just share the blog link on Facebook and Twitter. It is a lot of work trying to then email out the blog link to various lists. I tire easily, so I'm trying to keep things simplified. I know a lot of you like to use text messages to check in on me, but PLEASE DO NOT. Email responses or social media messages are preferred. I never know when I will doze off and sleep is essential right now and I need to sleep when I my body says so. Text messages just wake me up.

Surgery was a week ago yesterday. My days are still spent full-time at my parents in Lilburn recovering with home physical therapy, various medicines, lots of sleep and a few visits from close friends. My parents beyond amazing and they are trying to keep me on a good schedule, much like a little baby. Out of bed at 7 a.m. with a chair shower first, then physical therapy, breakfast, rest in a chair or nap before lunch, some computer/TV/reading/or nap in the afternoon, dinner around 6:30 p.m., then back in bed by 9 p.m. each night. Pretty boring, but it seems to be working. I want to feel better each and every day.

We will keep this protocol at my parents house until we make our first visits to doctors on Wednesday, June 26. My skull stitches come out that day and at that time my surgeon will evaluate my physical motor skills. They have told me to be patient. Today has been a great day, but yesterday we had another major numbness attack when I was working with the physical therapist. There is no rhyme or reason and the doctors have told me I must understand this can happen. So I have no idea when I will be able to walk or even drive alone again and that is frightening. Right now, I'm walking good with a walker and very gingerly with a cane in limited settings. I'm really working hard on my physical therapy as I want my mobility back, but I have no idea what this brain has in store for me. On June 26, the surgeon will make a determination on whether to continue home physical therapy or go to outpatient Shepherd Center visits for work that is targeted to brain and spine patients only.

On July 1, they will do a MRI to look at the surgery cavity and results from the brain surgery. They have already told us they got the whole tumor, so that's great. On July 3, my oncologists will read the full pathology reports (which has already been confirmed it was metastatic breast cancer to the brain) and the radiation oncologists will suggest what radiation therapy will be recommended for the additional treatment. It will either be one or 5 targeted treatments. I assume that will happen the week of July 8, but again I have no idea.

Once all that gets figured out, then hopefully there will be some plan on what life will be like going forward. I would love to get back to work by mid-July, but it is really all up to my brain's recovery and the reaction to radiation. I'm being patient realizing this is a process and I have to put my healing in God's hands for now. The best thing I can do is rest and not push myself too hard. Slow and steady will win this race I pray.

Many of you have asked what you can continue to do for me and for that I am humbled:

1) PRAY, PRAY, PRAY that this is a one-time only tumor and the cells do not grow back. These cells can regrow and hopefully due to diligent scans by my doctors, we can either see nothing grow ever again or catch things early and treat with more radiation. I want desperately to be in that 70% survivor group where these tumors only grow once and then I'm done. I want this outcome more than anything in this world.

2) Pray for my motor skills to return to a sense of normalcy and that I'm independent again in my movement.

3) Allow me to ask you for help later. I know many want to help now and have offered any service you can share to make my life easier. I also know you are worried about me, but I have to prioritize rest over visits. Please know I've made a list of things I will want help with if I'm allowed to go home and live on my own in the next two or three weeks. I will need meals assistance, shopping trips, chores around the house, company and it would mean SOOOO much to me to give my parents a break from the full-time care they are giving me now and let you come help me out as I try to get independent again. My parents have me set for now. Just please do not give up on me and let me call on you later as this is not a quick journey.

I love you all for putting me on more prayer lists than I ever knew existed on this earth.

I will try to continue to give blog updates, but I think we are in a good pattern of recovery right now for the next few days. I will be sure to update with any new developments

Pray for every day to be better than the day before for me and I thank God for each and every one of you.

With all my love,
Marcy

Tuesday, June 18 update

Hello all. Thanks for your continued support,  words of encouragement and most importantly,  abundant prayers. Please stay vigilant for me if you do anything at all. I believe in all my heart to have God hear my pleas to keep me safe.

It is easist to fight when you feel you are making progress and you feel you are moving forward,  but I had a hard lesson in trying to do too much yesterday. I tried to stay awake and alert, but by bedtime, my entire left side (arm and leg) went dead at 11 p.m. and it was beyond scary. I want to push myself to heal, but after that episode, we've decided more daily naps and less awake time is what is needed for the brain to rest. We assume the swelling is what is causing the episodes.

My emotions are in an ok place - they are up and down as to be expected. When I have the backslide episodes,  I break down in fear and frustration. A friend sent me this note that is a strength for me now: "Adversity is God's most effective tool to grow us. What seems to tear us down actually builds us up. Disappointment is inevitable,  but discouragement is a choice."

I am beyond blessed to have my parents, brother and close friends jumping into help.  I am worried about my parents most as this has changed their routine dramatically as I require constant care.  I need nothing outside of what they do for me, but they could use breaks, food and an escape from the house in the next weeks - even if it is for a golf or tennis game. Mom cooks totally different meals for me - nothing bad per my request so a break in the kitchen for their meals might be welcome. Just ask them. And thanks ti Denise and Anne, they are covering my mail, cats and home.  God bless you both.

Again, say all your prayers for us all.  That's the biggest gift I need. Pray for the MRI on July 1 so we can see our radiation options. Pray for the one and done gamma knife radiation treatment.  Pray the cells NEVER regrow and that I will be one I of those 70% survivors in 10 years. Pray for the return of my body strength. I don't need to run a marathon ever,  but just to walk normal again and feel good and strong.

More to write later, but be assured I will be giving you my thoughts on living my happiest life in living every minute for now and not waiting until something seems like it is the right time to put in place. Planning is great, but waiting on things makes no sense to me now. Live each day with complete utter joy and let go of petty annoyances and disagreements is a great mantra. Let that be my gift to you - to love with every fiber of your being to all walks of life. Look for the good in people. It will astound you.

Love,
Marcy

Day four update

Very quick update. Settling into recovery routine. Full night of restful sleep past two nights. PT is first thing before out of bed each day, then chair shower with help from mom.  My walking with a walker is still unstable. I feel like a baby.. as all i do each day is eat, sleep and PT 3x a day. I woke up feeling promise on moving my left side this morning,  but then my whole left leg was dead for 20 minutes after being good at first. I cried out of fear and frustration, but hopefully the brain swelling is just creating that problem because it did improve after my mom massaged it for awhile. My mom is keeping all my meds on schedule,  keeping me fed with all the healthy foods of mine she is unfamiliar with. I am so lucky for my parents every help as the assistance I need is large as I can't do anything alone. Bottom line, all precautions are to keep me from falling down.

Again, I plead for your prayers and supporting words. It gives me more fight than you will ever know and I cannot thank you enough.

Love, Marcy

Day three post op

Lots of good news to report... I got discharged yesterday from the hospital and am now living with my parents for the next couple of weeks.

The most exciting news is although my left side is still very week, my left toes and foot did move yesterday. Praise God!!!! The docs feel that with physical therapy I will get it back totally. They were very scared at first when it wasn't moving at all -- we all were. It could be one week, one month or one year, who knows, because the brain is a funny thing when you put air on it. But they said it will come back as they never touched the brain and to just rest and be patient. Let's be honest... maybe it was a God's work to have that tumor on the motor strip as I went from the first symptom to surgery in 16 days.  If I had no symptoms,  this could've been a very different outcome.

I start home PT today and if I still need the Shepherd Center, we can start it next week. I can walk gingerly and slowly with a walker and stairs with a cane. The goal is to only use the stairs once a day as I am not stable. The left side is slow, but it does move.

They sent me home with a medical shower chair so that felt good to finally feel a smidge human this morning by getting a shower. Mom did have to help me wash my hair. The surgeons shaved a lot of it... more than I thought and it looks scary, but all that really matters is I'm alive, right?

After getting to my parents last night, I had the best sleep in a week; probably a good 7 hours. I know rest is the best thing for my brain and recovery. The docs have me on an anti-anxiety medicine to keep the brain rested, plus the myriad of other drugs for post recovery.

I won't be doing much else than resting and PT the next two weeks so I feel I will be at my parents at least that long. I really miss my cats and my home, but this is the best place for everyone right now. Next steps is stitches out on June 26 and the radiation planning MRI on July 1. Then radiation will happen the week July 8. At that point, I have no idea if I'm allowed back to work or not. I really think the eariest will be July 15. I hope that by next week I can at least maybe work an hour a day remotely just to stay in touch. I do love my job and my work family; and again, I am beyond thankful for everyone of them stepping up for me so I can concentrate on this horrid battle.

I am also blown away from all of you who are supporting me and praying for me. I cannot say thank you enough. This is a very scary road. I know my doctors have praised me and cried with me for how much fight I have in me and how they will fight for me to be in that 70 percentile to live past the next 10 years. I will be receiving CT scans and MRIs regularly to make sure we catch ANYTHING early. I hate having to be in this cancer coocoon again versus being a normal carefree human being, but I have no choice. Just continue to pray pray pray for me, I beg of you.

I also can't thank my parents and brother enough.  For their overwhelming support, for telling me I will not have to wait until retirement to do all my bucket list activities,  as I am to live each day to the fullest from here on out. Give me your ideas as I make this list... I would love to know what places of the world inspire you. Travel and all of God's creations on this earth is what lights me up and makes me happy. I just pray I will be able to bouce back and do it again.

Many of you have asked for an address so here is my parents address where I am: 5294 Silver Creek Drive, Lilburn, GA 30047.

God bless each and every one of you for your support, care, concern and prayers. I want the big man upstairs to know I am sill needed on earth for a while longer. Love to you all, now time for another nap.

Two days post op

Hey there every one and thank you for your support since Friday. It means more than you know, to be lifted up in so much prayer by so many different people and groups to feel God had no way of ignoring to this plight to Him to keep me safe.

Here is the latest update following Wednesday night's surgery. I am still at Piedmont and bed bound, waiting on a physical therapy and occupational therapy consult today. The goal is to get me to stand, maybe walk and get in a seated or standing shower. Right now, my left side arm, leg, knee and hip is very weak, but after I slept last night it seems a little better. I have feeling on the whole left side with the weak movement, but I have zero movement in the left foot and toes which is scary. The docs are saying the head swelling will be its worst at day three from surgery which would be Saturday night so my symptoms could get worse before they get better. The unknown and lack of patience with the unresponsive body is tough to say the least.  I am on an anti-swelling and anti-seizure medicine to help the brain calm dowm. I am not a big pill taker, but I took ambien last night and it helped as I haven't been sleeping at all.  Rest does the body good so I'm going to try to take them until I can find some normalcy with rest.

The docs are happy with the head incision and said it is healing fine, and that my job is to not worry, keep the stress dowm and keep the brain light, happy and rested. My other goal is physical therapy for the weak body areas. The may put me in inpatient or outpatient therapy at The Shepherd Center, one of the top-five centers in the world located next door to Piedmont. I guess it pays to have your neurosurgeon on their board to get me in that special place. They will work my ass off!

More good news: I had another MRI yesterday to confirm the entire tumor was removed from surgery, so that scan came back clear- hallelujah!

Next steps after we determine the in- or outpatient therapy is rest for my mind for the next few weeks. Then they will do another MRI in early July. This will allow the radiation oncologists to plan my type of radiation - either one gamma knife or 5 targeted a sessions and it all depends on how deep the cavity is in the brain. That would happen mid -July.

Now that my cancer spread to another part of my body from the breast area,  I am now considered to be a Stage 4 metastatic patient-survivor.  What this means is I'm starting over with a new 10-year observation plan with my oncologists with MRIs and CT scans every couple of months, I love my oncologist and he is a very straightforward guy. He told me my odds were 70% in my favor of living beyond this. It is my job to do all I can do to make sure that 30% never gets a shot.

Obviously,  I have a myriad of emotions that I'm not ready to delve into yet as this requies a new mindset on living,  even more so than I had before. It is a lot of loss and hearbreak, but a lot of freedom of future worries as well.  Money is on my mind as even with good insurance, as my medical bills of the next ten years of tests, parking, medications, etc. will wind up being substantial  - easily over $30, 000 and that's underestiming right now. I try not to worry, but I do. How can you not?

Many of you have asked where to mail things or if you can visit, but until Sunday rolls around,  I do not think I will have an idea of where I will go - to the parents,  to my house or full-time rehabilitation.  I am beyond words with everyone's outpouring of love and support, but give me a bit for visits, cards, flowers, dinners or anything else as just getting through the day with my large team of care providers,  docs and tests are exhausting me. I have my family and a few close friends in the loop, so I'm good for now. I will let you know when I will need that type of support and trust me, be patient as I know that time will come - just thank you for wanting to help me. I am so thankful and touched you all want to help in some way or another. However, just your words of encouragement and prayers are perfect for now.

Love to you all,
Marcy

No one can ever prepare you for this - Part 2

I haven’t updated this blog since October 2012. That was my after my last breast reconstruction surgery and I’ve been meaning to write the final chapter about completing my journey, losing weight, getting healthier and getting my life back. Well I guess there was a reason I never wrote the final chapter as it looks as if this book it not closed.

On Monday, May 27 while in Washington D.C. walking near the Jefferson Memorial, I had a strange thing happen. I had a quick attack of numbness and lack of mobility on my left leg from the top of my knee down. It went away after about 10 minutes after I rubbed it to get the circulation back. I was scared, but I had no idea what it was in relation to. Was it cancer treatment after effects of nerve damage? Was it just getting older? I just had no idea what it was, but it went away quickly and didn’t come back. I was just confused. Then about a week later, I noticed some tingling in my left arm and a lot of pressure on the left-side of my skull. After consulting with my primary care doctor and oncologist, we booked an appointment with a neurologist for Thursday, June 13 – the soonest they could get me in.

Well, I didn’t have to wait for that appointment as on Friday, June 7 at around 11 p.m., I had a major attack on my motor capabilities. My whole entire left side when numb and was unresponsive. I went immediately to the emergency room that night and was admitted to Piedmont Hospital. A CT scan found a spot on my brain and a MRI diagnosed it as a brain tumor.

There are three options that the brain tumor could be:

1)      A benign meningioma. This is a tumor unrelated to cancer and is not atypical to happen to a woman my age.   
2)      A malignant breast cancer tumor. Turns out breast cancer cells really like to go to the brain.
3)      A primary brain tumor. This option is VERY unlikely and would be the worst possible outcome because a primary brain cancer is hard to survive. Looking at the scans, they do NOT think I have this as the tumor does not look like a glioblastoma.  

The good news is the doctors feel this is either options No. 1 or No. 2 and both of those options are treatable and beatable, so take a sigh of relief. The tumor is about dime-sized on the right side of my brain but it will require brain surgery to remove which will happen Wednesday afternoon, June 12. The surgery is a 2- to 4-hour surgery. The bad news is regardless of what type of tumor this is, any of them could grow back and it will require me to have MRIs done every three months to keep an eye on possible future growth. But many people do beat this in only one instance so that’s what I’m going to choose to focus on and pray for. I continue to hope for the positive, but it really sucks having to look over your shoulder constantly after the fact.  

What the doctors are most worried about is the following:

1)      While it is good news the tumor is small and looks to be capable of being removed, there is a large amount of swelling around the tumor. In benign tumors, typically you do not see that much swelling in comparison to the size of the small tumor, so unfortunately, one doctor feels the swelling is indicative of a metastasis of my breast cancer. Two doctors think that since the tumor is sitting in the meninges region that it is the meningioma. One the tumor is removed and the pathology is completed, they will know more and we will see which doctors are right. Then my surgeons and oncologists can come up with a plan of treatment.  
2)      The tumor is sitting directly on the area that controls motor function. Despite how accomplished my doctors are, they do have concerns about either temporary or permanent damage to my motor skills since the tumor seems to be attached to the brain. They said it was just 2 centimeters over, I’d be in the clear, but it is just too close to the motor strip for their liking. When they remove it, it may impact that area of the brain. The upside to this is the since the tumor is on the right side, it controls my left-side motor function. Since I am dominant right-handed, losing left-side movement is better than the right side. Bottom line, they would rather leave in the tumor than impact the brain, so they will be conservative. They can always use the gamma knife treatment to break up any tumor they cannot remove.

The most fantastic news is they did a CT scan of my whole body on Sunday and came back clear. There is no evidence the cancer went to any other part of my body.  That is the best news of all. Who knows? This tumor in my brain may not be the metastatic breast cancer after all. We just won’t know until after tomorrow. The tumor will be sent off to pathology and the exact results will not come back for 10-14 days. However, they will take some of the tumor and test it immediately to find out if it is benign, breast tissue or brain tissue, so we should know something after surgery tomorrow.

The other good news is they said other than a headache, my pain will be minimal in comparison to my breast cancer treatments and surgeries so that’s a good thing!

The doctors are telling me to plan to be out of work four to six weeks. They have said if I feel good and want to come back sooner, they might work with me after the three week mark; it will just depend on how I progress. Right now with so many variables from the motor skills uncertainty and if the tumor is cancerous or not, it is not possible to know exactly how long I will be gone. I have such an amazing team I work with at Atlanta Motor Speedway and everyone has stepped up to allow me to focus on my health and not worry about work and for that, I’m beyond thankful.

I am hospitalized at Piedmont Hospital in Atlanta. After the surgery tomorrow, I will be in ICU overnight and in a regular room for another 1 to 3 days they are estimating. I am asking the following: if you want to reach out to me, you are welcome to but please do so by a card, email, a blog comment or social media comment. Outside of my close friends and family, please do not use text messages or phone calls as I find it very distracting. I hate the phone beeping when I am trying to rest as much as possible. That way I can reach out to you when I feel up to it. I do ask for your many prayers. I will update where I am planning on my recovery after I am discharged from the hospital. I will spend some time at my house (I miss my kitties) for a couple days and around two weeks at my parents to make it easy on them. After the two-week post- surgery mark, I hope to be at home where I might be up for some visitors and help around the house.  Email me if you want my address to my house or my parents.

To be honest, I am scared as there are so many variables still undetermined and the risks are quite high. I always wondered how I’d react if my cancer ever came back. I thought it would be worse because I would know what I’m in for, but after a few tears, I’m actually okay.  I’ve been through this before and I have a lot of resources here at the hospital to lean on. I know I’ve beaten it before and I can handle this next battle. I’m strong, I’m smart and I will find a way to get through this. I’m also lucky to have a strong network of family and friends who are determined to get me through this. I’m also grateful to have an inherent positive spirit and a strong faith in God to get me through this.

Thank you for following me on this journey.  

 

Love,

Marcy

 

 

It hasn't sunk in yet....

Friday, Sept. 28 was my 12^th surgery. The 12^th time going under anesthesia and having to wake up wondering, “Where am I?” The most incredible news of all is that is the LAST time I am going to have to do that in my breast cancer journey and I’m not sure that has completely sunk in yet… LAST TIME.

This road has been riddled with complications. Nothing ever seemed to go right. That fact has changed a big part of who I am. I’ve learned that while it is great to hope, wish and dream, never hold onto your expectations too tight. Be open to other routes that you might be steered in. And that you will be okay even if it is down a dark, scary path. You have it in you to navigate it.

I see my surgeon today who should give me clearance to go back to work tomorrow. The surgery she did on Friday was to make the breasts more symmetrical and shaped well since the surgery in April was just about building them with the tissue. All she will have left to do is two more minor procedures that will be done under local anesthesia where I can drive myself to and from the surgery with only a day or less recovery. One will be done on Dec. 14^th and one in March 2013. I’m so thankful to have found her and that I’m FINALLY nearing completion.

Part of me felt like I had to be done to start the rest of my life. Funny thing is life goes on while you’re waiting it to start. And I’ve been living it while waiting. The April surgery really gave me hope for my future. While it was the most horrid recovery, it was the best thing for me. It set me up with breasts made of my own tissue that will be with me for life. No more reconstruction surgeries in the future. I can move forward and make this a part of my past. Since April, I’ve been working on my diet – eating cleanly and with Anti-Cancer eating properties. I’ve also been trying to gain my strength and stamina back with working out. All of the hard work has paid off as I’ve lost 40 pounds and am physically stronger than I’ve been in a long time. I made a promise to myself that I was going to make life “better than it was before” cancer and I’m off to a great start.

Part of that has been filling my life with travels that inspire me with awe and wonder. The big one on my bucket list was Yellowstone. And thanks to some amazing friends in the NASCAR community, that trip was fulfilled in September. I was so strong that completed a hike down Uncle Tom’s trail in the Canyon area of Yellowstone. 328 steps down to see Lower Falls and the hike back up says it feels like 2,000.  The amazing part is I was strong enough to do it! Thanks to my NASCAR friends, I felt like a champion that day.

Another great thing about this side of cancer is being able to inspire others. An incredible woman named Lisa Vingerling started a foundation called Pink Heals. It is about showing young women who are cancer survivors that there can be a great life on the other side of treatment. Not focusing on all you’ve lost, but focusing on the good and what you can gain from the experience. She helps to help you find the joy in life, to smile again, to meet other women with the same battle scars and to see the beauty in you again. I participated in a fashion show on Sept. 27 (yes, the night before surgery) she put on and thanks to hair and makeup, I felt like a million bucks. The best part was Lisa said some new survivors were in the audience and they were so blown away by all of us survivors – to see us happy and thriving meant the world to them to know that they can do it too.

Thanks for taking this journey with me.

Xoxo,

Marcy