Wednesday, July 31, 2013
Another consultation tomorrow
I have another visit to consult with a radiation oncologist tomorrow. It's the Hopkins outpatient cancer center in Bethesda. It would be a 15 minute drive for treatment instead of 60+. Charles and I still have a lot to talk about. I'll try to update tomorrow.
Friday, July 26, 2013
Split 50/50
Well, the radiation and chemotherapy appointments yesterday were enlightening but still not all that helpful.
The first consultations was with the medical oncologist, who discussed chemotherapy treatment. His opinion, based on the pathology that puts my tumor in grade 3 (anaplastic astrocytoma), is that we should proceed with treatment immediately. His theory is that there's so little of it left that it's better to treat it now before it re-grows. My "MGMT methylation" test shows that it would respond well to the chemo treatment. However, there's no way to measure the success of treatment since there is no more evidence of the tumor left on the MRI. There is also no guarantee that the treatment will prolong the time before regrowth, although that is what they assume based on extrapolated data from treatment on grades 2 and 4. No one has a crystal ball though to know when it would have grown back without treatment either. I call his approach "going in with guns blazing" to be aggressive as possible.
The treatment is oral pills every day for the initial 6 week radiation therapy. Then it's 5 days of oral high dose chemo and 23 days off to recover. They do that cycle for 6 in a row, as long as all the blood counts are stable like white blood cells, red blood cells, and platelets. Short term side effects are hair loss, nausea, vomiting, fatigue, headache, blood clots, and bone marrow suppression. Long term effects are the lasting effect of bone marrow suppression. There is also a very small risk that it can cause cancers in other parts of the body (WHAT THE WHAT??).
Then we met with the radiation specialist. He was split himself between treatment and no treatment. Radiation is 5 days a week for 6 weeks. The total amount of radiation given is set by standards and previous testing. It affects the tumor cells as well as a radius beyond that. The astrocytes, cells the tumor grew from, have little arms w/ fingers similar to a nerve cell. They call these tumors "infiltrating" because they branch out into healthy tissue, which is why it's impossible to remove 100% by surgery. The radiation is precise, focal energy specifically aimed at the tumor "bed" (empty space where it was) and the surrounding areas.
Side effects are fatigue, headaches, motor problems, sensory problems, hair loss, and blurred vision. There's also possibility of getting a sunburn-like rash at the site since I'm so fair skinned, but using lotions could prevent the rays from getting in during future treatments so prescription creams are available. There is possibly severe long term effect. Energy could be permanently lower than normal. Also, some people report feeling mentally slower than before. He compares it to ageing 10 years, which doesn't as big of a huge difference for a 30 year old as it does for a 60-70 year old. I would still be able to drive as long as I continue to not have any seizures, which I've been pretty lucky with so far. The radiation does cause some swelling at the treatment site so it's possible it could cause seizures anyway. Plus, I might be too fatigued to drive myself to treatments, especially if they're an hour each way.
I had read that radiation can only be done once, but that's not entirely true. If there is cancer in other parts of the brain, it can be performed there. Although, brain tumors are primary cancer, they don't spread to other areas of the body like other cancers. Also, if enough time has passed for the healthy cells to repair, like 5-10 years, they could do it again in the same area. It is considered one "prescription plan" so it wouldn't be considered a specialist visit every day (although I'd have to check with our health insurance on that).
Again in this case, there is no way to know if it's working since there is nothing to track on scans. He was more conservative than the oncologist. He said that if the tumor grows and causes neurological symptoms like seizures or other things, it could be irreversible anyway, basically permanent brain damage. So either way you're taking a risk, long term treatment effects or permanent damage to the brain. He said "If you came in here and said you wanted to do treatment, I wouldn't tell you that was the wrong answer. If you came in and said you absolutely didn't want treatment, I wouldn't say that was the wrong answer either. It comes down to your own comfort level and what you will regret later on. When it grows back, will you regret not doing the treatment sooner? Or if you have the treatment right away and have long term side effects, will you regret doing it? Which will help you sleep better at night?"
Charles say it would drive him crazy to know there was something growing in his brain and would want to get as much of it gone as possible. He wants me to fully recover from surgery another couple months even to get fully rested and in good shape, then do treatment after the first or second observation scan.
I'm being more conservative with my view on it. I don't want to jump into severe treatments right away. First of all, there's no way to definitively tell if it's working and there is no 100% cure anyway. As someone with an engineering mind, not having quantifiable evidence would be really hard for me. We also don't know when it will grow back. I've had this tumor for over a decade now. It could be extremely slow growing. I could have another few years or even another decade before the tumor grows again. That would be a lot of time with good quality of life if avoiding treatment. There is possibility of long term side effects that aren't reversible. I don't want to seem "slow on the uptake" from this for the rest of my life even if it does prolong my life by a long time. The methylation test being positive doesn't just go away with time. The chemo will be just as effective later on as it would be now if we put off treating. Plus, our children are sick straight from November to April especially with starting full time school in September, so I don't want a compromised immune system during all that.
So basically, the consultation visits raised more concerns than actually answering questions. The chemo oncologist will be taking my case to the tumor board again on Monday and he'll call me back, but the radiation oncologist seems to think it won't help anyway. He thinks the board will be split on their answers with half saying do it and the other half saying don't. So it's up to me. Charles wants me to make up my mind based on my health and mental comfort without taking into effect our finances or family resource situation (childcare and rides). I still find myself thinking about the fact that the bigs start kindergarten in a month, and my supplemental insurance policy would pay benefits in 2 years if we can wait that long.
The first consultations was with the medical oncologist, who discussed chemotherapy treatment. His opinion, based on the pathology that puts my tumor in grade 3 (anaplastic astrocytoma), is that we should proceed with treatment immediately. His theory is that there's so little of it left that it's better to treat it now before it re-grows. My "MGMT methylation" test shows that it would respond well to the chemo treatment. However, there's no way to measure the success of treatment since there is no more evidence of the tumor left on the MRI. There is also no guarantee that the treatment will prolong the time before regrowth, although that is what they assume based on extrapolated data from treatment on grades 2 and 4. No one has a crystal ball though to know when it would have grown back without treatment either. I call his approach "going in with guns blazing" to be aggressive as possible.
The treatment is oral pills every day for the initial 6 week radiation therapy. Then it's 5 days of oral high dose chemo and 23 days off to recover. They do that cycle for 6 in a row, as long as all the blood counts are stable like white blood cells, red blood cells, and platelets. Short term side effects are hair loss, nausea, vomiting, fatigue, headache, blood clots, and bone marrow suppression. Long term effects are the lasting effect of bone marrow suppression. There is also a very small risk that it can cause cancers in other parts of the body (WHAT THE WHAT??).
Then we met with the radiation specialist. He was split himself between treatment and no treatment. Radiation is 5 days a week for 6 weeks. The total amount of radiation given is set by standards and previous testing. It affects the tumor cells as well as a radius beyond that. The astrocytes, cells the tumor grew from, have little arms w/ fingers similar to a nerve cell. They call these tumors "infiltrating" because they branch out into healthy tissue, which is why it's impossible to remove 100% by surgery. The radiation is precise, focal energy specifically aimed at the tumor "bed" (empty space where it was) and the surrounding areas.
Side effects are fatigue, headaches, motor problems, sensory problems, hair loss, and blurred vision. There's also possibility of getting a sunburn-like rash at the site since I'm so fair skinned, but using lotions could prevent the rays from getting in during future treatments so prescription creams are available. There is possibly severe long term effect. Energy could be permanently lower than normal. Also, some people report feeling mentally slower than before. He compares it to ageing 10 years, which doesn't as big of a huge difference for a 30 year old as it does for a 60-70 year old. I would still be able to drive as long as I continue to not have any seizures, which I've been pretty lucky with so far. The radiation does cause some swelling at the treatment site so it's possible it could cause seizures anyway. Plus, I might be too fatigued to drive myself to treatments, especially if they're an hour each way.
I had read that radiation can only be done once, but that's not entirely true. If there is cancer in other parts of the brain, it can be performed there. Although, brain tumors are primary cancer, they don't spread to other areas of the body like other cancers. Also, if enough time has passed for the healthy cells to repair, like 5-10 years, they could do it again in the same area. It is considered one "prescription plan" so it wouldn't be considered a specialist visit every day (although I'd have to check with our health insurance on that).
Again in this case, there is no way to know if it's working since there is nothing to track on scans. He was more conservative than the oncologist. He said that if the tumor grows and causes neurological symptoms like seizures or other things, it could be irreversible anyway, basically permanent brain damage. So either way you're taking a risk, long term treatment effects or permanent damage to the brain. He said "If you came in here and said you wanted to do treatment, I wouldn't tell you that was the wrong answer. If you came in and said you absolutely didn't want treatment, I wouldn't say that was the wrong answer either. It comes down to your own comfort level and what you will regret later on. When it grows back, will you regret not doing the treatment sooner? Or if you have the treatment right away and have long term side effects, will you regret doing it? Which will help you sleep better at night?"
Charles say it would drive him crazy to know there was something growing in his brain and would want to get as much of it gone as possible. He wants me to fully recover from surgery another couple months even to get fully rested and in good shape, then do treatment after the first or second observation scan.
I'm being more conservative with my view on it. I don't want to jump into severe treatments right away. First of all, there's no way to definitively tell if it's working and there is no 100% cure anyway. As someone with an engineering mind, not having quantifiable evidence would be really hard for me. We also don't know when it will grow back. I've had this tumor for over a decade now. It could be extremely slow growing. I could have another few years or even another decade before the tumor grows again. That would be a lot of time with good quality of life if avoiding treatment. There is possibility of long term side effects that aren't reversible. I don't want to seem "slow on the uptake" from this for the rest of my life even if it does prolong my life by a long time. The methylation test being positive doesn't just go away with time. The chemo will be just as effective later on as it would be now if we put off treating. Plus, our children are sick straight from November to April especially with starting full time school in September, so I don't want a compromised immune system during all that.
So basically, the consultation visits raised more concerns than actually answering questions. The chemo oncologist will be taking my case to the tumor board again on Monday and he'll call me back, but the radiation oncologist seems to think it won't help anyway. He thinks the board will be split on their answers with half saying do it and the other half saying don't. So it's up to me. Charles wants me to make up my mind based on my health and mental comfort without taking into effect our finances or family resource situation (childcare and rides). I still find myself thinking about the fact that the bigs start kindergarten in a month, and my supplemental insurance policy would pay benefits in 2 years if we can wait that long.
Wednesday, July 24, 2013
What I remember from June 19th
Here's my recollections from the first 24 hours after my surgery.
June 19th. We get up around 5am to get ready and head over to the hospital. I think it was a 6am-ish arrival time. We checked in and waited for the insurance people to arrive. We got all the paperwork signed and went back to the family waiting area. They took me back to the prep area by myself.
The nurse took a medical history and asked about current medications, etc. She started an IV line. I generally have low platelets so when she put in the needle for the IV, I actually squirted blood all the way over to the privacy curtain. They let Charles and my parents back to sit with me while we waited for the doctors to come by.
The surgeon came first to talk about how the surgery would go and when my family could expect to hear from him. He asked if the hospital could use my left over slides from the removed tumor for research. I told him "Of course. I don't want any of it back!" He marked the right side of my head behind my ear with a marker.
Then the anesthesiology team came to talk to me. They over-shared for sure. They told me I'd be breathing a mask of 100% oxygen because they'd put me into such a deep sleep that I wouldn't be breathing until I was intubated. Ugh. Way to make someone worry, right?
I told my family "I wrote everything I needed to say in my emails so I'm not getting sentimental right now. See you later." They hugged/kissed me and the nurses wheeled the bed into the OR.
I was switched over onto the operating table. I glanced at the instruments and probably shouldn't have. One of the nurses asked what kind of music I like and I told them "Top 40 hits type of stuff". Someone made a joke about "Music from the 40's?" I talked to the nurse about the tracks on the ceiling, which apparently brings in the portable MRI machine. They put the oxygen mask over my mouth and said to breathe deeply, which was pretty hard knowing what was coming next. Then I was out. I actually remember waking up in the OR and gagging, probably as they were taking out the intubation tube.
I woke up in the NCCU (neosurgical critical care unit). I hit the nurse button because I was getting sick. Man, that anesthesia is no joke. The nurses change my gown and gave me a bin to throw up into next time. I was only able to have a stick with a sponge on the end that I could dip in water. I used it to keep my face cold and my lips wet. My throat was sore from the intubation tube and I wanted to take a sip of water so badly, so even though the nurse said I couldn't have any water, I took a sip of the water from the "sponge cup" and was immediately sick. Eventually I was allowed to have ice chips, which I ended up having a lot of. I had machine operated air cuffs around my legs to prevent blood clots and that was blowing itself up every few minutes.
My family came to see me. My dad got me a new sponge popsicle since the previous one had gotten marker on it from behind my right ear. He gave me cold, wet paper towels to put on my face which felt really nice. The nurse came in to clean up dry blood from behind my ears. My parents left and I remember saying to them on their way out "I'm glad I remember you!" And one of them said back "Us too!"
Charles stayed with me that night. I had 3 IVs and one of them was a blood pressure monitor in my left wrist in a main artery. Every time I bent my left wrist it set the alarm off. I remember Charles moving my hand several times throughout the night to make the alarm stop. They came in every few hours to do neurological checks and to change my IV meds. I was getting a lot of fluids and antibiotics. They gave me pain medicine and anti-nausea meds though the IV.
The next morning, the surgeon came in bright and early to talk about the surgery. He was very optimistic about how much he got out and that it was "likely low grade." That's about all I remember from that conversation, although I did write about it in a blog entry from just after the surgery. I had the nurse help me flip over since I hadn't moved all night and my hips were sore.
Later that morning, I was moved to the regular neurosurgery inpatient floor. I had a wonderful nurse tech that helped me move, despite some embarrassing moments. I got set up in the regular room and started walking around. I was unsteady at first, of course, but it got easier and by the next day, I was even going to the bathroom by myself. They decreased the frequency of my neuro checks and I was able to sleep a bit more.
Now I think the rest has been documented in posts that I made in the few days after.
June 19th. We get up around 5am to get ready and head over to the hospital. I think it was a 6am-ish arrival time. We checked in and waited for the insurance people to arrive. We got all the paperwork signed and went back to the family waiting area. They took me back to the prep area by myself.
The nurse took a medical history and asked about current medications, etc. She started an IV line. I generally have low platelets so when she put in the needle for the IV, I actually squirted blood all the way over to the privacy curtain. They let Charles and my parents back to sit with me while we waited for the doctors to come by.
The surgeon came first to talk about how the surgery would go and when my family could expect to hear from him. He asked if the hospital could use my left over slides from the removed tumor for research. I told him "Of course. I don't want any of it back!" He marked the right side of my head behind my ear with a marker.
Then the anesthesiology team came to talk to me. They over-shared for sure. They told me I'd be breathing a mask of 100% oxygen because they'd put me into such a deep sleep that I wouldn't be breathing until I was intubated. Ugh. Way to make someone worry, right?
I told my family "I wrote everything I needed to say in my emails so I'm not getting sentimental right now. See you later." They hugged/kissed me and the nurses wheeled the bed into the OR.
I was switched over onto the operating table. I glanced at the instruments and probably shouldn't have. One of the nurses asked what kind of music I like and I told them "Top 40 hits type of stuff". Someone made a joke about "Music from the 40's?" I talked to the nurse about the tracks on the ceiling, which apparently brings in the portable MRI machine. They put the oxygen mask over my mouth and said to breathe deeply, which was pretty hard knowing what was coming next. Then I was out. I actually remember waking up in the OR and gagging, probably as they were taking out the intubation tube.
I woke up in the NCCU (neosurgical critical care unit). I hit the nurse button because I was getting sick. Man, that anesthesia is no joke. The nurses change my gown and gave me a bin to throw up into next time. I was only able to have a stick with a sponge on the end that I could dip in water. I used it to keep my face cold and my lips wet. My throat was sore from the intubation tube and I wanted to take a sip of water so badly, so even though the nurse said I couldn't have any water, I took a sip of the water from the "sponge cup" and was immediately sick. Eventually I was allowed to have ice chips, which I ended up having a lot of. I had machine operated air cuffs around my legs to prevent blood clots and that was blowing itself up every few minutes.
My family came to see me. My dad got me a new sponge popsicle since the previous one had gotten marker on it from behind my right ear. He gave me cold, wet paper towels to put on my face which felt really nice. The nurse came in to clean up dry blood from behind my ears. My parents left and I remember saying to them on their way out "I'm glad I remember you!" And one of them said back "Us too!"
Charles stayed with me that night. I had 3 IVs and one of them was a blood pressure monitor in my left wrist in a main artery. Every time I bent my left wrist it set the alarm off. I remember Charles moving my hand several times throughout the night to make the alarm stop. They came in every few hours to do neurological checks and to change my IV meds. I was getting a lot of fluids and antibiotics. They gave me pain medicine and anti-nausea meds though the IV.
The next morning, the surgeon came in bright and early to talk about the surgery. He was very optimistic about how much he got out and that it was "likely low grade." That's about all I remember from that conversation, although I did write about it in a blog entry from just after the surgery. I had the nurse help me flip over since I hadn't moved all night and my hips were sore.
Later that morning, I was moved to the regular neurosurgery inpatient floor. I had a wonderful nurse tech that helped me move, despite some embarrassing moments. I got set up in the regular room and started walking around. I was unsteady at first, of course, but it got easier and by the next day, I was even going to the bathroom by myself. They decreased the frequency of my neuro checks and I was able to sleep a bit more.
Now I think the rest has been documented in posts that I made in the few days after.
5 weeks
I'm feeling better each week, sometimes day by day (although not every day). I still get dull headaches, but I have an appointment with my neurologist on Monday. I'm wondering if since the migraine meds weren't working because of the tumor, if they'd work now that it's gone. That's my main question for Monday.
I know this seems like small beans, but I have severely dry skin behind my ears and on the back of my ears. It might be coincidence and it might not since it started a couple days after the surgery. I smell like chapstick to myself since I've been using blistex back there, and I can't keep from itching it. I know, weird.
I'm getting my stamina back as I work at it. I can be responsible for my 3 energy machines for a few hours at a time now, probably not all day but at least in the morning and between when the nanny is here and when Charles gets home. I've been making dinner most days and doing dishes for many of the days too. I can lift whatever I want, including several grocery bags of juice and milk. So far I've been able to walk 1.5 miles straight on the treadmill at the gym and I upped my weights from 5s to 10s. I haven't tried jogging or running yet. It scares me a little considering that last time I ran, I had a debilitating migraine for 24 hours.
I do still nap. Yesterday, I did a bunch of errands in the morning so I napped during the early afternoon (probably the same schedule for today!). It was only half an hour but MAN did it feel good. I was so energized for the afternoon and evening. And it definitely made a big difference in my mood for that time of day, witching hour while trying to cook dinner. I did have to take some medicine to help me get to sleep though, fair trade off for so much energy and good mood while the kids are cranky. I have completely cut my coffee addiction. I drink a lot of decaf chai with creamer, of course, but nothing with caffeine most days.
We have awesome family that helps us take care of our kids when we need it, so Charles' mom is going to come tonight for dinner and stay overnight so we both can go to my appointments tomorrow. We are so blessed to have such wonderful family and friends! I have my list of questions ready to go for tomorrow. We also got my reports and images from the last 2 MRIs from the hospital in the mail yesterday, so we're ready to go!
I was thinking of writing a post about what I remember from the first 24 hours after my surgery. It will be a long one though, and not super relevant since it was over a month ago.
I know this seems like small beans, but I have severely dry skin behind my ears and on the back of my ears. It might be coincidence and it might not since it started a couple days after the surgery. I smell like chapstick to myself since I've been using blistex back there, and I can't keep from itching it. I know, weird.
I'm getting my stamina back as I work at it. I can be responsible for my 3 energy machines for a few hours at a time now, probably not all day but at least in the morning and between when the nanny is here and when Charles gets home. I've been making dinner most days and doing dishes for many of the days too. I can lift whatever I want, including several grocery bags of juice and milk. So far I've been able to walk 1.5 miles straight on the treadmill at the gym and I upped my weights from 5s to 10s. I haven't tried jogging or running yet. It scares me a little considering that last time I ran, I had a debilitating migraine for 24 hours.
I do still nap. Yesterday, I did a bunch of errands in the morning so I napped during the early afternoon (probably the same schedule for today!). It was only half an hour but MAN did it feel good. I was so energized for the afternoon and evening. And it definitely made a big difference in my mood for that time of day, witching hour while trying to cook dinner. I did have to take some medicine to help me get to sleep though, fair trade off for so much energy and good mood while the kids are cranky. I have completely cut my coffee addiction. I drink a lot of decaf chai with creamer, of course, but nothing with caffeine most days.
We have awesome family that helps us take care of our kids when we need it, so Charles' mom is going to come tonight for dinner and stay overnight so we both can go to my appointments tomorrow. We are so blessed to have such wonderful family and friends! I have my list of questions ready to go for tomorrow. We also got my reports and images from the last 2 MRIs from the hospital in the mail yesterday, so we're ready to go!
I was thinking of writing a post about what I remember from the first 24 hours after my surgery. It will be a long one though, and not super relevant since it was over a month ago.
Saturday, July 20, 2013
Oncology Radiology Appointments
Even though I don't need treatment immediately, it's inevitable that I will. So the nurse recommended I get consultations with the onc/rad team. So that will be next Thursday morning, the 25th. Charles wants to go but I have to leave at butt crack of dawn and the nanny isn't here that early. If he doesn't go, it'll be the longest drive I'll do on my own in a while.
Edit: Charles' wonderful mom is coming to stay the night so he can go with me. That's really great. I can definitely use his support and his help with driving too.
I'm not really nervous about the appointments. I already know I don't have to do the treatments yet. I'm only go to be put on their list of current patients and to gather information. I still need to come up with a list of questions though so I'm not totally unprepared.
Edit: Charles' wonderful mom is coming to stay the night so he can go with me. That's really great. I can definitely use his support and his help with driving too.
I'm not really nervous about the appointments. I already know I don't have to do the treatments yet. I'm only go to be put on their list of current patients and to gather information. I still need to come up with a list of questions though so I'm not totally unprepared.
Thursday, July 18, 2013
Official return to work date
My short term disability was extended to August 18th, so it looks like my official return to work date is August 19th. I will try full time and see how that works out. That date gives me time to get this overnight sleeping thing back under control and try to work back my wake up time slowly over the next couple weeks. I'm still not able to get up at 6:30 am like I used to, but I'm working up to being up at 7 am with the kids, hopefully by next week so Charles can go to work for full days without taking time off. I do still have appointments, like Monday afternoon with the neurologist, and eventually in the next few weeks with Hopkins oncology, so he will probably need to take time off but not 10 hours like he did this week.
Wednesday, July 17, 2013
A little clarification
Thankfully, the nurse called me back today to answer our last few questions. Official wording on pathology report: infiltrating astrocytoma with some signs of anaplastic transformation (WHO grade 3).
The pathology report was discussed at the brain tumor board meeting on Monday morning. The consensus of the multi-disciplinary group was that treatment was not necessary right now because it was a "gross total resection" meaning that there is only microscopic cells left. That being said, some of the cells in my slides were showing rapid growth, or mitosis, which is indicative of stage 3, which is why they say it's grade 2 approaching grade 3 astrocytoma. We don't want to treat it now because radiation is only done once, so if there's any changes in the scans, they want that in their "back pocket" in case we need it.
There was one test that was still pending earlier this week, the mgmt methalation test, which indicates how well the cells would respond to chemo. Mine is positive, which is, well, positive. They still use the same treatment either way, but the positive result means it will work well on my type of tumor if/when we need it. Will I need treatment eventually? Yes, we just don't know when which is why we are watching closely with frequent scans. At first it'll be every 3 months, then maybe stretch to 4 depending on how stable it is, probably never more than every 6 months. Because this is a "borderline lesion" between 2 and 3, they are likely to never space it out to the 2 year interval it was back when I was younger.
If there are any changes, we would do treatment. There is pretty much just an empty hole of spinal fluid there right now, but changes on the MRI would include increase in the "flair" view of the MRI or enhancement around the edges of where the tumor used to be. If there are changes, the standard treatment is 5 day per week radiation, 7 day per week low dose chemo oral pills, for 6 straight weeks. Then 1 month break and re-scan. Then 5 days of high dose chemo, 23 days off. Repeat that cycle for 6 cycles or as long as the body tolerates it and frequent MRI scans.
Even though I don't need treatment now, or even after the 3 months MRI scan (thinking positively), I am still going to have a consult with the oncology team at Hopkins in the next few weeks. I would be able to gather more information then and become an existing patient, someone familiar to the team and vice versa.
The one remaining question is whether this is technically considered cancer or not. The answer is yes. The report says "anaplastic transformation (WHO grade III)" which means according to the world health organization, it's a stage three tumor which is cancerous. I'm still very thankful we had such a skilled surgeon who got more than 99% of it. And while it doesn't need treatment now, grade 3 makes it more like to reoccur. We just need to be vigilant, and then treat appropriately.
The pathology report was discussed at the brain tumor board meeting on Monday morning. The consensus of the multi-disciplinary group was that treatment was not necessary right now because it was a "gross total resection" meaning that there is only microscopic cells left. That being said, some of the cells in my slides were showing rapid growth, or mitosis, which is indicative of stage 3, which is why they say it's grade 2 approaching grade 3 astrocytoma. We don't want to treat it now because radiation is only done once, so if there's any changes in the scans, they want that in their "back pocket" in case we need it.
There was one test that was still pending earlier this week, the mgmt methalation test, which indicates how well the cells would respond to chemo. Mine is positive, which is, well, positive. They still use the same treatment either way, but the positive result means it will work well on my type of tumor if/when we need it. Will I need treatment eventually? Yes, we just don't know when which is why we are watching closely with frequent scans. At first it'll be every 3 months, then maybe stretch to 4 depending on how stable it is, probably never more than every 6 months. Because this is a "borderline lesion" between 2 and 3, they are likely to never space it out to the 2 year interval it was back when I was younger.
If there are any changes, we would do treatment. There is pretty much just an empty hole of spinal fluid there right now, but changes on the MRI would include increase in the "flair" view of the MRI or enhancement around the edges of where the tumor used to be. If there are changes, the standard treatment is 5 day per week radiation, 7 day per week low dose chemo oral pills, for 6 straight weeks. Then 1 month break and re-scan. Then 5 days of high dose chemo, 23 days off. Repeat that cycle for 6 cycles or as long as the body tolerates it and frequent MRI scans.
Even though I don't need treatment now, or even after the 3 months MRI scan (thinking positively), I am still going to have a consult with the oncology team at Hopkins in the next few weeks. I would be able to gather more information then and become an existing patient, someone familiar to the team and vice versa.
The one remaining question is whether this is technically considered cancer or not. The answer is yes. The report says "anaplastic transformation (WHO grade III)" which means according to the world health organization, it's a stage three tumor which is cancerous. I'm still very thankful we had such a skilled surgeon who got more than 99% of it. And while it doesn't need treatment now, grade 3 makes it more like to reoccur. We just need to be vigilant, and then treat appropriately.
4 weeks
4 weeks ago today was the surgery. I am doing better every week, but I've still noticed some odd things. First, my scar is starting to get feeling back so I get zings of feeling here and there. It also feels tight so when I move my eyebrows around, it just plain feels weird.
I'm still gaining back my stamina, so I've been going to the community gym for walks. We try to walk outdoors but it's so stinking hot! I've been going on errands too, which is tiring, but needs to be done anyway.
I've noticed some lacking in muscle memory, like forgetting which direction to turn the water faucets to make them turn off. So yeah, sometimes I get reeeeally cold at the end of my shower! It makes me wonder how I'll do with playing the piano (which I've been able to do since I was 5 years old) or knitting/crocheting (which I learned in the last 18 months). I haven't tried either of those yet.
This probably isn't new, or even unusual for the general populous, but I've found myself forgetting things. I make myself a to-do list every day (simple things like making phone calls, emails, or studying for EIT) but if the activity doesn't make it onto the physical list, it doesn't get done, no matter how many times I remind myself before I fall asleep the night before.
I'm still sleeping poorly at night, but it probably has to do with the unknown of the pathology. I am supposed to talk to the nurse again today so hopefully that will put some of our concerns to rest so I can REST! Today I woke up at 7:15 and that seemed SO early, which is ridiculous, considering I was up and out of bed by 6:30 every weekday morning when I was working and 7am with Liam opening our door on weekends.
I have been getting mild headaches, but nothing like the intense migraines I used to get. I'm hopeful this will at least keep that away. I have an appointment with my local neurologist on Monday to talk about it. So part of my to-do list every day is bugging the other offices to fax my records.
I'll update more once we have our information straightened out from the pathology.
I'm still gaining back my stamina, so I've been going to the community gym for walks. We try to walk outdoors but it's so stinking hot! I've been going on errands too, which is tiring, but needs to be done anyway.
I've noticed some lacking in muscle memory, like forgetting which direction to turn the water faucets to make them turn off. So yeah, sometimes I get reeeeally cold at the end of my shower! It makes me wonder how I'll do with playing the piano (which I've been able to do since I was 5 years old) or knitting/crocheting (which I learned in the last 18 months). I haven't tried either of those yet.
This probably isn't new, or even unusual for the general populous, but I've found myself forgetting things. I make myself a to-do list every day (simple things like making phone calls, emails, or studying for EIT) but if the activity doesn't make it onto the physical list, it doesn't get done, no matter how many times I remind myself before I fall asleep the night before.
I'm still sleeping poorly at night, but it probably has to do with the unknown of the pathology. I am supposed to talk to the nurse again today so hopefully that will put some of our concerns to rest so I can REST! Today I woke up at 7:15 and that seemed SO early, which is ridiculous, considering I was up and out of bed by 6:30 every weekday morning when I was working and 7am with Liam opening our door on weekends.
I have been getting mild headaches, but nothing like the intense migraines I used to get. I'm hopeful this will at least keep that away. I have an appointment with my local neurologist on Monday to talk about it. So part of my to-do list every day is bugging the other offices to fax my records.
I'll update more once we have our information straightened out from the pathology.
Monday, July 15, 2013
Confused about the C word
The pathology report was released to my surgeon on Wednesday last week, the 10th, exactly 3 weeks after the surgery. There was some scheduling issues with the surgeon and/or pathologist being on vacation out of the office, so finally, the surgeon spoke directly to the pathologist about my report. We're still a little confused about it though so we have some more questions to ask him when we get into contact with him again. I first talked to the nurse this afternoon before the surgeon called me this evening.
So officially, it's an astrocytoma, grade 2 approaching grade 3. It is "infiltrating with some anaplastic quality" and "some mitosis". This whole "approaching" thing is what makes it confusing. If it was solidly grade 2, we would do watchful waiting. But even grade 2 is not considered benign as it almost always progresses to grades 3 or 4 if not dealt with. However, they considered this surgery a "gross total resection" which means getting as much as possible without taking healthy tissue. If it was clearly grade 3, we'd start into treatment right away. As it stands now, it's "approaching grade 3" so he wants to have me repeat the MRI in 3 months instead of 4. If there's any change, we would do treatment from then. That's the whole nine yards with radiation and chemo. I don't even want to write out what the "standard of care" is in this case because it's intense and hopefully not necessary.
We do still have questions for the team though. The nurse initially said "if any cells are grade 3, we would treat it as a grade 3" but then the surgeon says even though there's "some mitosis" that it doesn't need treatment yet. We also don't know how long we'll have to do the every 3 month scans. We also don't know what's considered "a change" on the MRI. They do agree they got greater than 99% of the tumor so how would they even be able to tell what a change is?? It looks like an empty hole already!!
We were told by another surgeon (the Georgetown fellow) that grade 3 is always cancerous and grade 2 sometimes is. I'm not sure where I fall then, considering that this is straddling the line. That's another question for the team I guess. The nurse did say that "grade 2 is not benign" but no one has said the word cancer or malignant.
So that's all we know right now. Sorry about all the quotes. I'm just trying to write what we know so I don't forget and anything quoted was directly taken from what they told me. I don't know enough about pathology to really understand what most of it means. I'm hoping to get a hard copy of the report to take with me to my local neurology appointment on Monday. I might even go back to B-more to pick up the last 2 MRI scans to take with me.
So officially, it's an astrocytoma, grade 2 approaching grade 3. It is "infiltrating with some anaplastic quality" and "some mitosis". This whole "approaching" thing is what makes it confusing. If it was solidly grade 2, we would do watchful waiting. But even grade 2 is not considered benign as it almost always progresses to grades 3 or 4 if not dealt with. However, they considered this surgery a "gross total resection" which means getting as much as possible without taking healthy tissue. If it was clearly grade 3, we'd start into treatment right away. As it stands now, it's "approaching grade 3" so he wants to have me repeat the MRI in 3 months instead of 4. If there's any change, we would do treatment from then. That's the whole nine yards with radiation and chemo. I don't even want to write out what the "standard of care" is in this case because it's intense and hopefully not necessary.
We do still have questions for the team though. The nurse initially said "if any cells are grade 3, we would treat it as a grade 3" but then the surgeon says even though there's "some mitosis" that it doesn't need treatment yet. We also don't know how long we'll have to do the every 3 month scans. We also don't know what's considered "a change" on the MRI. They do agree they got greater than 99% of the tumor so how would they even be able to tell what a change is?? It looks like an empty hole already!!
We were told by another surgeon (the Georgetown fellow) that grade 3 is always cancerous and grade 2 sometimes is. I'm not sure where I fall then, considering that this is straddling the line. That's another question for the team I guess. The nurse did say that "grade 2 is not benign" but no one has said the word cancer or malignant.
So that's all we know right now. Sorry about all the quotes. I'm just trying to write what we know so I don't forget and anything quoted was directly taken from what they told me. I don't know enough about pathology to really understand what most of it means. I'm hoping to get a hard copy of the report to take with me to my local neurology appointment on Monday. I might even go back to B-more to pick up the last 2 MRI scans to take with me.
Friday, July 12, 2013
Pathology pending, call Monday
Seems the surgeon wants to discuss the pathology personally with the pathologist, and then he'll give me a call on Monday. charles will be working from home that day too, which is good. I don't know if that's good or bad news. At least, we'll know by then! I was really hoping we would know today so we could celebrate or weep in our beer this weekend.
In the meantime, I've been switching over to local doctors, which is more than frustrating. One of my physicians wouldn't return my calls for over a week, I was calling and leaving messages every single day. I finally went in to see him today and he tells me one of my current medications makes me *more* prone to seizures!! Needless to say, I've already requested my medical records be sent to another doctor and responsibility for the anti-seizure meds to go there as well. I am not willing to stay with a doctor who doesn't return my calls, especially when it's as important as this.
I did get a script for ambien, so hopefully I'll start to get more rested in the coming week or so. The thunderstorm at 2:30am last night didn't help!
I've been keeping up with my light work out routine. Yesterday I did about 15 minutes of walking on the treadmill at 3.5 mph. That's up from 3.0 mph the last time. I still had the "emergency stop" clip on my shirt though, just in case, since I was the only one in the gym at the time, and I got a cramp in my side after 10 minutes. I am still trying to work back up to where I was before, which is running 2 straight miles at about 6.0 mph. I still have the end of Sept Autism run in Baltimore on my radar, but who knows if I'll be strong enough by then.
In the meantime, I've been switching over to local doctors, which is more than frustrating. One of my physicians wouldn't return my calls for over a week, I was calling and leaving messages every single day. I finally went in to see him today and he tells me one of my current medications makes me *more* prone to seizures!! Needless to say, I've already requested my medical records be sent to another doctor and responsibility for the anti-seizure meds to go there as well. I am not willing to stay with a doctor who doesn't return my calls, especially when it's as important as this.
I did get a script for ambien, so hopefully I'll start to get more rested in the coming week or so. The thunderstorm at 2:30am last night didn't help!
I've been keeping up with my light work out routine. Yesterday I did about 15 minutes of walking on the treadmill at 3.5 mph. That's up from 3.0 mph the last time. I still had the "emergency stop" clip on my shirt though, just in case, since I was the only one in the gym at the time, and I got a cramp in my side after 10 minutes. I am still trying to work back up to where I was before, which is running 2 straight miles at about 6.0 mph. I still have the end of Sept Autism run in Baltimore on my radar, but who knows if I'll be strong enough by then.
Thursday, July 11, 2013
Still no pathology
It's unusual for it to take longer than 3 weeks but I imagine the holiday last week has slowed things down. We don't need to go back to JH to get the results, they'll be able to email us the official report and we can either call or email with questions.
I hope we get it today or tomorrow so we don't have to wait for another weekend or longer.
I hope we get it today or tomorrow so we don't have to wait for another weekend or longer.
Wednesday, July 10, 2013
3 Weeks Out
The fatigue is starting to set in. It's not because of my stamina though, it's mostly because I can't sleep!! I try to go to bed early, but end up laying awake until after midnight, even on nights when I don't nap. Then I sleep in late because I can't seem to drag myself out of bed before 8am. Charles is supposed to be going back to work full time for the last few days of this week, but that means I have to be awake with the kids early until our nanny gets here at 9am, which I can't seem to be able to do. What I really need is a full week of 10 hour nights sleep and then I'll be able to get up early again. Wishful thinking, right? And then I have to work my way up to getting up at 6:30am to get myself ready for work before the kids get up at 7. That seems almost impossible right now.
I'm still trying to keep moving physically. I do 15 minute walks at the gym a few times a week. We do outdoor walks almost daily. I play with the kids. I've started lifting Ellie a little bit. And I am starting to help out with cooking and household chores.
I'm keeping my mind moving too. I started a new book and I cracked my EIT/FE book too. That one made me sleepy, maybe I should read that one more before bed time!!
I'm trying to get my medical records switched over to local doctors so I have several appointments locally in the next few weeks. Doctors' offices can be frustrating! I'm able to drive still so I can go to appointments by myself though. I'm still getting tension headaches so I have to visit the neurologist soon, but at least I haven't had a debilitating migraine so far.
We are so thankful for all the help and visitors. Liam has just about had enough. He gets so worn out with people in the house all the time and he's sleeping like a log. The girls are loving it though. More people to pay attention to them and more people for Ellie to ham up.
We're still waiting on the pathology. Hopefully today or tomorrow, although they've been telling us that phrase since July 1rst, so who really knows. It was supposed to be 2 weeks after surgery but today is exactly 3 weeks. Like I said in the last post, it's not as important as it seems though. The course of this isn't going to change based on what we know about it, maybe in the future but not for now.
I'm still trying to keep moving physically. I do 15 minute walks at the gym a few times a week. We do outdoor walks almost daily. I play with the kids. I've started lifting Ellie a little bit. And I am starting to help out with cooking and household chores.
I'm keeping my mind moving too. I started a new book and I cracked my EIT/FE book too. That one made me sleepy, maybe I should read that one more before bed time!!
I'm trying to get my medical records switched over to local doctors so I have several appointments locally in the next few weeks. Doctors' offices can be frustrating! I'm able to drive still so I can go to appointments by myself though. I'm still getting tension headaches so I have to visit the neurologist soon, but at least I haven't had a debilitating migraine so far.
We are so thankful for all the help and visitors. Liam has just about had enough. He gets so worn out with people in the house all the time and he's sleeping like a log. The girls are loving it though. More people to pay attention to them and more people for Ellie to ham up.
We're still waiting on the pathology. Hopefully today or tomorrow, although they've been telling us that phrase since July 1rst, so who really knows. It was supposed to be 2 weeks after surgery but today is exactly 3 weeks. Like I said in the last post, it's not as important as it seems though. The course of this isn't going to change based on what we know about it, maybe in the future but not for now.
Tuesday, July 9, 2013
No path
Still no pathology. Waiting. I really don't think it will change much, certainly not my treatment or recovery, maybe prognosis...
Thursday, July 4, 2013
Onward and upward
For 2 weeks and 1 day, we knew about the diagnosis and upcoming surgery so I was getting my "affairs" in order, lots of legal paperwork and even writing my "just in case this is goodbye" letters and videos to my family. I brooded over what ifs and posted a lot of introspective ramblings.
Then we got through the first few days after the surgery. I was anxious to update the blog myself and keep everyone updated with how it was going. Then we had the follow up with nothing but good news. I'm still having trouble letting myself come down from this (we all are), but I'm sure you've noticed I'm posting less and writing less verbose posts. I'm trying to get myself off my devices, spending time with the family, stay physically moving, onward and upward. Only good things from here, right? We each took a twin to see despicable me 2 today, which was fun.
Obviously, I'm still not sleeping well as it's 11pm right now. Baby has an ear infection, and I don't mean me! And when she sleeps badly, we all do, especially Charles now that I kick him out of the bed to take care of any of them between the hours of 10pm and 8am. It's good to know my mama intuition wasn't affected by the surgery, I was pretty sure it was her ear bothering her.
Anyway, probably posting less often from here on out. I'm sure I can't com up with enough to write about for several posts a day for my whole recovery! How boring would that be anyway? And not just for me ;)
Then we got through the first few days after the surgery. I was anxious to update the blog myself and keep everyone updated with how it was going. Then we had the follow up with nothing but good news. I'm still having trouble letting myself come down from this (we all are), but I'm sure you've noticed I'm posting less and writing less verbose posts. I'm trying to get myself off my devices, spending time with the family, stay physically moving, onward and upward. Only good things from here, right? We each took a twin to see despicable me 2 today, which was fun.
Obviously, I'm still not sleeping well as it's 11pm right now. Baby has an ear infection, and I don't mean me! And when she sleeps badly, we all do, especially Charles now that I kick him out of the bed to take care of any of them between the hours of 10pm and 8am. It's good to know my mama intuition wasn't affected by the surgery, I was pretty sure it was her ear bothering her.
Anyway, probably posting less often from here on out. I'm sure I can't com up with enough to write about for several posts a day for my whole recovery! How boring would that be anyway? And not just for me ;)
Wednesday, July 3, 2013
What have you learned?
I think I've learned a lot from this.
First of all, prayer works! I think initially after the diagnosis, Charles and I both had a shake in our spirituality. With how radically the diagnosis has changed, it's restored some of that faith. And others believe that their prayers have helped too, I know my parents believe it was partially prayer that influenced the outcome.
I also have a new found respect for the generosity of human kind. We had SO much help from friends, family, coworkers, and even from complete strangers, it really makes you appreciate how kind people can be to people they are connected to personally and even not connected to at all.
I now know what it feels like to be on the receiving end of all that kindness. I think in the past, I haven't been as sensitive to what others have and are going through, and this experience makes me much more aware of how much more sensitive and caring I can and should be. "Paying it forward" is a big lesson here.
I also know how important it is to really research your options and choose the best possible care you can get. The right medical team makes all the difference in the world. I know I was meant to go to this surgeon and that he probably saved my life in general as well as the overall quality of my life to avoid further treatments. The medical facilities I went to were the absolute best and we're lucky to be so close to such wonderful and famously excellent care. Trust in the people that care for you and let them do their jobs.
Optimism. Don't be afraid. Stay positive. Don't let the downs get you too far down. Let the ups be up. Let the people around you lift you up. Don't let the disease pull you down, don't wallow on the worst case scenario.
First of all, prayer works! I think initially after the diagnosis, Charles and I both had a shake in our spirituality. With how radically the diagnosis has changed, it's restored some of that faith. And others believe that their prayers have helped too, I know my parents believe it was partially prayer that influenced the outcome.
I also have a new found respect for the generosity of human kind. We had SO much help from friends, family, coworkers, and even from complete strangers, it really makes you appreciate how kind people can be to people they are connected to personally and even not connected to at all.
I now know what it feels like to be on the receiving end of all that kindness. I think in the past, I haven't been as sensitive to what others have and are going through, and this experience makes me much more aware of how much more sensitive and caring I can and should be. "Paying it forward" is a big lesson here.
I also know how important it is to really research your options and choose the best possible care you can get. The right medical team makes all the difference in the world. I know I was meant to go to this surgeon and that he probably saved my life in general as well as the overall quality of my life to avoid further treatments. The medical facilities I went to were the absolute best and we're lucky to be so close to such wonderful and famously excellent care. Trust in the people that care for you and let them do their jobs.
Optimism. Don't be afraid. Stay positive. Don't let the downs get you too far down. Let the ups be up. Let the people around you lift you up. Don't let the disease pull you down, don't wallow on the worst case scenario.
How do you feel? 2 weeks out.
My incision is starting to get some feeling back, which means it's painful. I've started taking some pain killers again. My neck has some swollen glands and makes it sore to move my head around. I still have a ton of sinus pressure which makes my head hurt all the way across my eyebrows and forehead.
I'm still not tired and not sleeping well overnight. I really would like for the steroid to get out of my system since I was told that was the issue with sleeping and the weakness in my muscles. I do spend time resting in bed during the day even if I'm not sleeping.
I started going to the gym again, was told I should start out with 1/5th of what I would normally do, so I only walked on the treadmill at 2mph (saunter) for like 12 minutes. It doesn't seem like much but it's something. My plan is to work up to a 5k either the autism one at the baltimore zoo on Sept 29th or the brain tumor one next May in DC. That one at least is definitely do-able, end of Sept, I'm not so sure.
Charles is ready to go back to work. Once I'm able to lift Ellie (end of next week), I can be alone w/ the kids for longer than 30 minutes and can do wake-up/breakfast routine until the nanny gets here. He should be able to go back to work full time then since he gets up a couple hours before she gets here.
Grace has a stie on her eyelid and Ellie is super cranky. I think she has an ear infection. She was up late crying last night (after 9pm) and then cried in the middle of the night and again at 5am. It's hard to sleep well overnight with all that going on. They both have a doctor's appointment this afternoon so we'll see what's going on. Liam is falling back into his routine, which is good for us cause he was a handful for a little while. He's getting back to his sweet, silly self.
I am still enjoying the mind game apps I like to play. Yesterday at the appt, they showed us the 3 day follow-up MRI and it looked like that gap was filling in already. I'm convinced it's about keeping my mind active. I will probably start studying for the EIT/FE exam in the coming weeks too, especially once I'm able to taper off one of the anti-seizure meds in the next 10 days as that could still be making me feel foggy. I keep misplacing things, which is really annoying.
Still waiting on official pathology. Emotionally, it's hard to let go of and just celebrate my new bill of clean health. We were SO worried for over a month that it's hard to say "It's over." I think once we get the official diagnosis and genetic make-up, and taper off some meds, it'll be easier to feel like it is resolved.
I'm still not tired and not sleeping well overnight. I really would like for the steroid to get out of my system since I was told that was the issue with sleeping and the weakness in my muscles. I do spend time resting in bed during the day even if I'm not sleeping.
I started going to the gym again, was told I should start out with 1/5th of what I would normally do, so I only walked on the treadmill at 2mph (saunter) for like 12 minutes. It doesn't seem like much but it's something. My plan is to work up to a 5k either the autism one at the baltimore zoo on Sept 29th or the brain tumor one next May in DC. That one at least is definitely do-able, end of Sept, I'm not so sure.
Charles is ready to go back to work. Once I'm able to lift Ellie (end of next week), I can be alone w/ the kids for longer than 30 minutes and can do wake-up/breakfast routine until the nanny gets here. He should be able to go back to work full time then since he gets up a couple hours before she gets here.
Grace has a stie on her eyelid and Ellie is super cranky. I think she has an ear infection. She was up late crying last night (after 9pm) and then cried in the middle of the night and again at 5am. It's hard to sleep well overnight with all that going on. They both have a doctor's appointment this afternoon so we'll see what's going on. Liam is falling back into his routine, which is good for us cause he was a handful for a little while. He's getting back to his sweet, silly self.
I am still enjoying the mind game apps I like to play. Yesterday at the appt, they showed us the 3 day follow-up MRI and it looked like that gap was filling in already. I'm convinced it's about keeping my mind active. I will probably start studying for the EIT/FE exam in the coming weeks too, especially once I'm able to taper off one of the anti-seizure meds in the next 10 days as that could still be making me feel foggy. I keep misplacing things, which is really annoying.
Still waiting on official pathology. Emotionally, it's hard to let go of and just celebrate my new bill of clean health. We were SO worried for over a month that it's hard to say "It's over." I think once we get the official diagnosis and genetic make-up, and taper off some meds, it'll be easier to feel like it is resolved.
Tuesday, July 2, 2013
Thank you is not enough
We are overwhelmed by everyone's generousity. We have a list pages long of people we want to thank, but I'm not sure we'll be able to. We have had so many friends, family, friends and family of our friends and family, online friends, and even complete strangers join the support army.
So we want to thank you all for:
-Visiting
-Caring for the kids and helping Charles care for the kids
-Helping with household chores
-Bringing meals
-Sending nice cards, thoughts, prayers, and encouraging words
-Donating gift cards and in some cases, cash
-Donating time off so we don't have a lapse in income
-Giving the kids toys and games to distract them from the tense mood (they are so spoiled)
-Making homemade gifts like a crochet aftgan
-Even just reading the blog to help Google donate some income
You all have no idea how much we appreciate all these things and more. It has helped tremendously to know my family is cared for so I can concentrate on recovering. And I'm sure all the praying has helped too as we have so much to celebrate with my return to health. We have no way to thank each of your individually, although we are trying. So here is a general thank you. I know it shouldn't suffice for thanking each of you, but hopefully you can feel my sincerity. And know that we would return the favor too for any of you, just ask. We will "pay it forward" too.
So we want to thank you all for:
-Visiting
-Caring for the kids and helping Charles care for the kids
-Helping with household chores
-Bringing meals
-Sending nice cards, thoughts, prayers, and encouraging words
-Donating gift cards and in some cases, cash
-Donating time off so we don't have a lapse in income
-Giving the kids toys and games to distract them from the tense mood (they are so spoiled)
-Making homemade gifts like a crochet aftgan
-Even just reading the blog to help Google donate some income
You all have no idea how much we appreciate all these things and more. It has helped tremendously to know my family is cared for so I can concentrate on recovering. And I'm sure all the praying has helped too as we have so much to celebrate with my return to health. We have no way to thank each of your individually, although we are trying. So here is a general thank you. I know it shouldn't suffice for thanking each of you, but hopefully you can feel my sincerity. And know that we would return the favor too for any of you, just ask. We will "pay it forward" too.
Monday, July 1, 2013
Expected recovery
There is a side note to the appointment today. They removed the staples, which wasn't as bad as I expected, so I have to try to keep it clean still until it fully heals, which means I can't scratch at it. That will be hard. I also can't wash my hair until tomorrow, boo.
With no need for follow-up treatments, my only restrictions are self imposed to do only as much as I feel like I should. "If it hurts, stop. If you're tired, take a nap. But don't stay in bed all day." It's important to stay moving. Risk of blood clots for craniotomy patients is very high.
The nurse said I probably wasn't sleeping as much as expected because of the steroid I was on to reduce the risk of brain swelling. Today was the last of the tapered doses for that, so I might crash tomorrow or later this week. The other meds I'm on are supposed to be really tiring. I will actually be glad to be more tired so I can get to sleep faster at night. It might mean more naps too and that it will still take some time to get my stamina back. It may be a while before I can take on what my normal day used to look like and I know I have to be patient with myself and take each step forward as it comes.
I've started going to the community gym with Charles and doing very light workouts. They said I could start to ramp that up slowly, like do 1/5th of what I used to do and work my way up. That's about what I've been doing, just some light arm exercises with 5 pound weights. The steroids are making my muscles feel weak and shaky so hopefully that'll go away this week too as that leaves my system.
I still do have my "heavy lifting" restriction. So no picking up Ellie for another 10 or so days. After that, I'm able to be alone and responsible for the kids as my energy allows. Charles should start back to work full time next week. As long as I continue to have no seizures, I am allowed to drive and be alone with the kids. They might even taper off one of the anti-seizure meds in the next few weeks if the one that I'm on already will cover the needs.
They recommended waiting to go back to work until I'm back to 100%, able to meet the demands of my job. Physically it's not a very demanding job, mostly sitting at a computer, but being out and about for 8+ hours will probably be tiring, and I don't want to be leaving early to come home to nap! We're really really hoping for continued streak of no seizures so I can drive myself to work. I plan to at least by able to take the kids to kindergarten around the corner on my way back to work by end of August.
Speaking of driving, I'm able to travel. It's not pleasant to be in the car right now, but if we were to, say, take a week long trip to OC NJ, that would be allowed now. I will probably join my nephews and sister in Ocean City in August, which will be nice.
We are also so thankful for support army, but figure we can probably taper off our help requests as things improve and we get back to our normal routine. We wouldn't turn away a meal though! Those have been awesome.
The first follow-up observation MRI will probably be near my 31rst birthday at the end of October, or in early November. Happy birthday!
With no need for follow-up treatments, my only restrictions are self imposed to do only as much as I feel like I should. "If it hurts, stop. If you're tired, take a nap. But don't stay in bed all day." It's important to stay moving. Risk of blood clots for craniotomy patients is very high.
The nurse said I probably wasn't sleeping as much as expected because of the steroid I was on to reduce the risk of brain swelling. Today was the last of the tapered doses for that, so I might crash tomorrow or later this week. The other meds I'm on are supposed to be really tiring. I will actually be glad to be more tired so I can get to sleep faster at night. It might mean more naps too and that it will still take some time to get my stamina back. It may be a while before I can take on what my normal day used to look like and I know I have to be patient with myself and take each step forward as it comes.
I've started going to the community gym with Charles and doing very light workouts. They said I could start to ramp that up slowly, like do 1/5th of what I used to do and work my way up. That's about what I've been doing, just some light arm exercises with 5 pound weights. The steroids are making my muscles feel weak and shaky so hopefully that'll go away this week too as that leaves my system.
I still do have my "heavy lifting" restriction. So no picking up Ellie for another 10 or so days. After that, I'm able to be alone and responsible for the kids as my energy allows. Charles should start back to work full time next week. As long as I continue to have no seizures, I am allowed to drive and be alone with the kids. They might even taper off one of the anti-seizure meds in the next few weeks if the one that I'm on already will cover the needs.
They recommended waiting to go back to work until I'm back to 100%, able to meet the demands of my job. Physically it's not a very demanding job, mostly sitting at a computer, but being out and about for 8+ hours will probably be tiring, and I don't want to be leaving early to come home to nap! We're really really hoping for continued streak of no seizures so I can drive myself to work. I plan to at least by able to take the kids to kindergarten around the corner on my way back to work by end of August.
Speaking of driving, I'm able to travel. It's not pleasant to be in the car right now, but if we were to, say, take a week long trip to OC NJ, that would be allowed now. I will probably join my nephews and sister in Ocean City in August, which will be nice.
We are also so thankful for support army, but figure we can probably taper off our help requests as things improve and we get back to our normal routine. We wouldn't turn away a meal though! Those have been awesome.
The first follow-up observation MRI will probably be near my 31rst birthday at the end of October, or in early November. Happy birthday!
The good news!
Mostly good news today! We're still letting it all sink in, really. We don't have the official pathology report so it doesn't feel completely resolved, but there were a lot of "most likely"s and "probably"s.
The surgeon and the radiologist agreed that they got 99% of the tumor out during the surgery. He called it a "radical resection" that was very successful. It doesn't even matter what the official diagnosis is, with 99% of it gone, there's no need for follow-up treatment at this time. We even made sure to ask if anything could come back in the pathology that could make him change his mind and he said no. Even if it's stage 3, there's so much gone that they wouldn't have much to treat.
We don't have an official diagnosis of type and stage, so we don't know about long term prognosis. There is no 100% cure, so there is always a possibility it could come back, but we would decide treatment at that time. If it does grow back, it could come back as a more aggressive form, but we won't be talking about that for now. We just don't know. It could need another resection or biopsy with radiation and chemo.
But for now, we are just trying to celebrate the excellent news we have and enjoy the time we've been given. It will really sink in by early next week when we know for sure. It will be hard not to look ahead and worry about the observation MRIs, but we really need to try to just say "For the next 4 months, I'm tumor-free." Then after that it's every 6 months and maybe pushed to every 8 after that depending on how it goes. They are confident that I will be around for many years!! Hoozah!
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