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
Saturday, July 13, 2013
Wednesday, July 10, 2013
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
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, 2013
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
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
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