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