November 18, 2013 – The Final Chapter

 

Hello everyone,

This is Charlotte (Mom) again writing the blog that Marcy desperately wanted to finish herself.  It was her intention to improve to the point where she could keep you up to date and finally be well enough to reach out to you.  However, this was not the case.  Her health never fully recovered and her days were spent eating, enduring PT and OT, bathing, and sleeping.  Any kind of activity that she performed pretty much exhausted her and necessitated a nap afterward.  She had virtually no time to talk or visit with friends which was a huge disappointment to her. Please know that she was aware, however, of each and every email, phone call, card, and gift she received and was thankful that you all cared about her.  She greatly needed and desired to be surrounded by her friends and was heartbroken that she was unable to do so.  

So in honoring her wish, I will complete her blog, although I cannot do justice to her style of writing.

The doctor visit on August 30 to review the results of the MRI from August 28 showed improvement of the cancer cells in the brain but no change in the cells in the meninges.  At this point he informed us that her survival rate was now about three months if she had further brain surgery to implant an Omaya port (for chemo) OR three months if she chose no further treatment.  Since the Omaya treatment would cause intense headaches and of course would be another brain surgery and couldn’t guarantee the prolonging of her life, Marcy opted to forego this and try to enjoy her remaining months.  In fact, the family planned a trip to the beach where she would be surrounded by family and friends and lounge on the porch and gaze at the beauty and vastness of the Atlantic Ocean.  

Unfortunately, the headaches she had been experiencing never fully abated and were difficult to control even with pain medication.  Additionally, pain started creeping down her legs and caused her such discomfort that she was often unable to sleep/rest.  To combat these discomforts, the doctors increased pain medication, but sadly this resulted in lethargy and inability to remain awake long enough to eat/drink on a regular basis.

On Saturday morning September 14 (the day before we were to depart for the beach trip), Marcy collapsed and was unresponsive so she was rushed to Piedmont Hospital where she was admitted.   A CT scan proved inconclusive and at this point, due to her condition, doctors informed us that Marcy likely had only two weeks to survive.  With their suggestion, she entered in-home hospice  care.  She was returned to our home via ambulance on September 17 where her dad and I cared for and embraced her with love for the remaining days of her life.  Even though Marcy lost her hearing and her sight at this point, she continued to fight for life and endured for six and one-half weeks.  She died peacefully (and finally pain free) on Friday morning, November 1.

Marcy and the family are forever grateful for the love and support from her friends, family, co-workers, neighbors, and colleagues throughout her five year battle.  We realize what an inspiration she was to so many with her positive attitude, faith, and determination to overcome this disease. As we all know, though, we are not in control.  God has now wrapped his arms around her and will comfort all of us who now miss her.

Let’s honor her forever and improve our lives by remembering these words of Marcy and abide by them:  “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.”  Marcy Scott

 

 

 

 

 

Blog update: August 19, 2013

Hey everyone, this is Charlotte (mom) writing this blog for Marcy.

On Thursday, July 11, Marcy had the spinal tap to try to determine why she was having mobility issues with her left side.  As stated in the previous blog, doctors thought she might have an infection or excessive swelling which they could treat with steroids. We received the results of the tap on Monday, July 15, and unfortunately the doctors reported that there were cancer cells in the spinal fluid which meant she could not have the less invasive targeted radiation.  Instead she had to have 15 FULL brain radiation treatments that they started immediately that day Unfortunately, this caused her to lose all her hair again. By Wednesday, July 17, she was experiencing excruciating headaches and loss of mobility on the left side so they put her in the hospital and did an EEG but that was inconclusive. They kept her in the hospital so she could have her daily radiation treatments and then they moved her to a rehab facility right down the street from Piedmont. They wanted her to have PT for her mobility issues plus they transported her to radiation each day. She was a very sick young lady during the 3 weeks of radiation treatments. Any kind of brain activity - TV, computer, phone, talking, movement - caused intense headaches that were relieved only by massages, cold compresses, and rest/sleep. Her dad and I tag teamed 24 hour shifts so someone could be with her 24/7 while she was in the hospital and rehab facility.

Once the radiation treatments were finished, we moved her into our home on
Saturday, August 3 so we can care for her until she improves (her two cats moved in also – watching the cats and our dog interact has been our entertainment).  The first week following radiation still required both the care of my husband and me because she continued to have the headaches and mobility problems.  In fact, she was unable to attend a scheduled doctor appointment on August 7 so thankfully her oncologist held a phone conference with her that day. Physical therapy (PT) and occupational therapy (OT) started at home with just some basic movements which were difficult for her.  

By the second week following radiation, the headaches had decreased in both duration and intensity so her mobility increased too.  However, we’re talking baby steps – walking a few paces with a walker, sitting for 30 minutes at the kitchen table to eat, using a wheelchair to get her to the bathroom to sit on a real toilet. Now we are even able to give her a “shower” too.  Our home does not have a full bath downstairs but it has a large laundry room with a utility sink, so we purchased a small kiddie pool from Wal-Mart.  We hooked up a short hose to the sink spigot and attached a shower head to the hose.  Then we placed her shower chair inside the pool and we created our special shower which is refreshing but exhausting for her.

We are presently entering the third week following radiation and we see improvement daily, but again in baby steps.  We have few headaches, can walk (with the walker) a little farther, and can sit up longer. The recovery time for this type of radiation is about 3 to 4 weeks, so her day consists of resting and sleeping.  She is still unable to watch TV, use the computer, read, talk for long periods, etc.  We expect this to improve as she regains her strength.

She thanks you for all your emails, phone calls, and cards but right now she is physically unable to respond to all of these meaningful, caring gestures. We are amazed and thankful for our neighbors, friends, and her friends who have generously supplied food and assistance on a continuous basis.  We are blessed to have such caring people in our lives. As she regains her strength, we hope she will be able to communicate with everyone.

On August 30, we return to the doctor for an MRI to see the results of the radiation treatments. .We know you want continuous updates, but we won’t have anything until after the MRI.

Thank you so much for your concern,
Charlotte Scott

 

Setbacks: Saturday, July 13th update

So I updated my blog on Wednesday, went to a PT appointment at 1:30 p.m. and got immediately summonded to the hosptial to meet with my radiation oncologist and brain surgeon. It seems that my motor skills have not been improving and seem to be worsening as they have been tapering me off my steroid that controls the swelling. I have weakness on my left side (legs, arms and hands) that has no consistency when it hits or how severe it is. Sometimes, I it just a weakness and sometimes a total numbness where I cannot move the extremity.

When I met with the two docotrs 3 p.m., they said they wanted to do a spinal tap on Thursday, July 11th to rule out two things: 1) a post surgical infection in the brain and 2) that the cancer cells started growing again. They really did not believe that No. 2 was an option as they did the MRI on July 1 and the tumor had been completely removed with no microscopic cells showing. They just wanted to rule out these two things before upping my steroid for the swelling.

I will get the results of the spinal tap Monday morning and they have also had me talk to my neurologist as they think this could also be a symptom of the tumor being removed and the weakness episodes being a mild form of a seizure. I had no idea how many varying forms of seizures that exist. Mine is no considered on a grand-mal basis as I never lose consciousness. The neurogologist doubled my anti-seizure medicine last night, so the hope is these new doses of the drugs will fix the problem.

The steriod keeps me up at night (which is typical) so we are toying between Benadryl and a sleeping pill to get me more rest. The goal is to have me on the couch the next two days resting as much as possible and then doctor appointments on Monday and Tuesday.

I've lined up having a lot of people over to check in on my and stay overnight from today through Thursday hoping one week is enought to get a handle on this and get more control over my motor functions.

I know I had this grand plan to get back to work next week remotely, but I have to listen to my body and heal. It will do me no good to push. I am still doing a little work answering a few emails here and there, but I'm still a long way away from trying to put in a full day. My company has been great about letting me transition back in from working from home for awhile until I can get the motor control to start doing the commute again.

I will update when I have more - probably Tuesday after I meet with all three of my doctors again.

Thank you again your care and concern and continued efforts by my close friends and family who are jumping in to help in any way possible. Wish me as much rest this weekend and continued strenght!

xoxo,
Mary

Wednesday, July 10 update

Sorry it has been so long since I've updated my blog, but I had a ton of appointments set up and I wnated to give everyone all the updates at once.

I had an MRI on July 1. My radiation oncologist was upset he did it so early since there is considerable brain swelling still. I am still battling weakness on the left side of my body and they are upping my steriod dosage to help heal that. The most frustrating part is unlike most surgeries where you can expect to get a little better day after day, the brain is like a roller coaster. One minute you are fine and the next you can collapse on the floor. Very scary. I just never know when my left side is going to give out on me.

My neurologist has cleared me to drive as of today (one month from surgery), but he wants me to stay on the anti-seizure medicine for 6 months as insurance. I'm a bit gun shy to drive as it seems everytime I get out of a car (in the past with my parents driving), I get the left side weakness. It is almost like maybe a motion sickness. Now we are trying to let me sit in the car for 10 minutes after it stops before I get out to see if that helps my stability.

My radiaion oncologist has scheduled my next MRI for July 29. At that time he will determine my radiation plan. I don't want to go into too much detail, but it will either be one treatment or 5 treatments that will happen in mid-August and I will be able to work during the treatment.

After the radiation, the radiation oncologist will follow up with MRIs every three months to make sure no cells are growing. If cells continute to grow, we will continue to treat with radation.

My regular oncologist will team up with my radiation oncologist and handle scheduling my full body CT scans. The body is all clear and the chemo seemed to do the job there, but since the cancer has shown it did move to the brain (who knew chemo couldn't pass a blood brain barrier), they just want to make sure it doesn't go anywhere else. He will do CT scans every three months.

Both of these doctors have a 10-year scan plan for me and the scans will taper off as long as they show not to have any more cells growing.

I asked my oncologist for a survival rate number. We both agreed that me having triple negative breast cancer (which means my breast cancer was not reliant on hormones to grow it and means there are no targeted medicines they can give me to slow the growth of the hormones. Bottom line, triple negative means they have no idea why these cells grow and they are the most agressive growers) is not a good thing for me, but we can't control it. All we can do is scan me like crazy and pray the cells do not grow back. What is in my favor is my cells were in one small tumor and not spread throughout the brain, so their hope is this is a one and done incident. I need all your prayers that these cells do not grow anymore and the scans reamin clear. The radiation will be used to just blast any microscopic cells that might be lingering post surgery.

I am starting outpatient PT today with Piedmont Hosptial. It might take awhile to get into the Shepherd Center, so I'm going to work with them as long as possible. This will be one of the hardest parts of my recovery as I still have some motor skills issues. They do not believe anything was touched during surgery, but just due to the swelling of the brain. This will just take time.

I've been working about 2 hours a day this week from home. Next week, I will return to work to AMS full-time coming off disability, but working from home due to the body instability issues. This will allow me to do PT in the mornings and nap once during the day to gain strength. It's been fun as I've gotten my whole team on Skype and we are just doing meetings that way. I already have a ton of meetings and tasks we will be taking care of next week.

If the body keeps coming along and getting stronger, the goal is for me to return to AMS on July 22. Please pray that in the next week and a half I will get stronger and be able to make that long drive to Hampton. If not, then I may continue to do remotely for another week, but honestly, I'm really eager to get back into the office, but I realize my body will tell me what I'm capable of. Even when I do go back to the office, I will take a nap each day to gain strength much like I did when I went through chemo. It really makes a difference in being able to have energy to make it through the day.

That's about it for now. Wish me luck that the PT will help me get stronger and that the steroid will help the weakness issues.

I love you all for your continuted support and encouragement!

xoxo,
Marcy

Monday, July 1 update: There's no place like home!

So I moved home on Saturday,  June 29 after being away from home for three weeks. It has been so therapeutic to be home and have some kitty love. Both have been like magnets to me and that's been just perfect.

I had a lot of help getting settled in on Saturday and Sunday between my mom and friends, Michelle and Denise. The house is clean, everything unpacked, food in the house and a some purging/organization help from Denise. They all went overboard to make sure I had more than I could imagine to feel good at home.

Saturday,  Michelle and I made a trip to the grocery store, but I used one of the riding carts for the first time ever. I was glad I used it as I just do not have the strength yet to be running around big places. I had the strength to do the shopping,  but my body wasn't worn out after we finished. I'm still using a cane in public, but I'm getting around my house okay on my own and always using handrails on the stairs. I'm a little weak, but it is manageable to get around. I'm still taking one nap a day and that is a must from an energy standpoint and being diligent with my physical therapy.

My friend Kristy is taking me to my MRI appointment today and I've got my small group bible study coming to my house tonight.

I'm so thankful that my parents are getting a three-day break from me on yesterday, today and Tuesday to return to their routine after giving me an entire three weeks of care.

That's it for today. Say a prayer for a good MRI test today and continued healing for my physical strength and stamina. We get the MRI results on Wednesday which will let us know next steps for radiation.

Thank you again for everyone's support, kindness, prayers, gifts/cards, assistance and words of encouragement.  I'm getting stronger every day!

Xoxo,
Marcy

Thursday, June 27 update

Hi everyone.  I'm checking in, but there isn't much new news to report.

I met with my surgeon yesterday and my head stitches came out. Based on what they shaved on the top of my head for surgery, I will be living in headband scarves for months as my hair grows out. Oh well, it is what it is.

The next medical steps are to continue with home physical therapy to regain my strength. The surgeon thought I was progressing nicely, but it is a daily balance for me between trying to do more each day and resting as much as possible. Some days I feel good and other days I realize that I pushed too hard.

My neurologist will meet with me on July 8 (about one montth from surgery) to evaluate if I can come off the anti-seizure medicine and start driving again. Since I had numbness episodes,  they are sticking to a one month rule of not using a car. Both PT and the neurologist will let me know when my normal routines can start returning on July 8 (or I hope that is the day I get some freedom again). Right now I am walking with a cane, and I'm getting stronger each day. I still struggle with balance. If my eyes are closed attempting a balance exercise, I will fall if the therapist isn't there to catch me. Needless to say, when I do my PT on my own, I keep my eyes open!  I am getting more comfortable walking without the cane inside the home, but the outside world terrain isn't as flat as home flooring so it is usually with me at all times.

Exciting news for me: I am moving home to my house in Mableton on Saturday, June 29. I am so happy to get back to my home and my cats. My parents have been beyond amazing, so the last thing I am is unappreciative. But after 3 weeks, I want them to get back to their normal routines too.

The next big steps happen next week. My post-surgical MRI is Monday, July 1. That scan will determine the radiation plan my oncologists decide upon. I should get that recommendation and schedule from them on July 3. From what they've told me it will happen pretty quickly in July once they have their decision. I am eager for that news but just have to wait for now.

Emotionally I'm doing well. I do have my moments when the fear sets in, but I just don't allow myself to stay in a dark place too long. I've always been a believer that staying busy is good medicine and I will be seeing my counselor regularly again to help manage this part of the journey.

So many friends have signed up to help me with at least having a daily check in/errand/company support as I move back home Saturday. I've got help lined up daily through July 7 which is an amazing blessing and will relieve my parents so much stress. Thank you to all my friends who have taken shifts or errand assistance to help me and my family.

That's all I have for now. Thanks for the continued love, prayers and support.

Xoxo,
Marcy

Sunday, June 23 update

Hi all. Quick update for today. Mom is taking me to my townhouse just for a day trip so my cats know I am still alive, as I haven't seen them since June 7 when I left the house abruptly. I could not be more thrilled to see them today as I miss them so. Our family boxer dog, Brunswick has been as sweet as he can be while at my parents, but I know my cats are distressed and need to see me.

Also, I was supposed to be in the delivery room during the month of June to aid my good friend Anne with the birth of her first baby, but my surgery canceled that plan entirely, so today will be a joyous meeting of Morgan Urmanski for the first time. I can't lift anything over 10 lbs., but I will at least get to put him on my lap for the first time and it will be a special day.

My church group is bringing me lunch and another friend will come for dinner, so it will be a full day of friendship. I still tire and will have to make myself take a nap, but I am sure the cats will love that.

I am still not allowed to drive, but I am walking with the cane primarily now verses the walker,  which is great progress!  I am not real steady, nor do I have stable balance yet,  but I am working hard on my PT and now have faith I can get it back (or at least I pray so). I still have weak areas, but I am fighting to regain my my mobility again, all while being prudent and careful. I get a little better each day and that is all I'm asking for and the body is responding.

I will still be living at my folks for at least another week as PT, rest and nurtition are my three main focuses through the help of my family. It is amazing how much I still need naps to gain strength.

I really turned a corner about a week after surgery and we seem to be in a pattern of moving forward.  I haven't had any more numbness episodes to report and I will continue my healing until we get next step instructions from the doctors on post surgery treatment. This is just the holding pattern for now - all about healing.

Again, when I am allowed to move home, I will ask for help from those of you that have offered. A chore, a drive somewhere to an appointment or the store, some company, cooking,  etc... please let me put another SOS call out when that time comes. My parents have been more amazing than one person deserves,  but I do want to go home again at some point too. I'm making goals, knowing they can change day to day. Being flexible is what I'm focusing on, but it can frustrating for a planner like me. I read this quote by Gloria Steinem that rang true for me this week that made me feel better about all my list making: "Dreaming after all is a form of planning." So I am choosing to make my lists of dreams to come true.

I love you all for your prayers, cards, flowers, visits, food to my family, gifts, smiles, care, concern and love. You all have given me and my family strength you probably don't realize.  I will be a success story. I will make you proud.

Love,
Marcy

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