Nausea and Frustration

Treatments are going well so far. I'm able to drive myself to and from the office. They only last like 10 minutes start to finish. I take my chemo pill about an hour before I go and the anti-nausea med an hour before that.

Last night I have my first real bout with the nausea. Every time I laid down, I felt like I had heartburn and nausea together. I took all 3 of the prescription meds I have for that, ate a handful of crackers, and then propped myself up. I was finally able to go to sleep after a little while listening to music. They basically said to treat this like morning sickness (also all day, like during pregnancy), so frequent small meals etc.

I got the official final report from last week's MRI but I have NO idea what it means, so I have to wait until I see the oncologist on Tuesday to figure out what it actually means.

This week has been frustrating for my crocheting. My first hat was way too small, like baby head small. And when I went to unravel it, it got a knot in it and I had to cut it. Then today I started an open weave sun hat. On the 8th start, I finally got it. I knew it might be a little difficult to do this fine motor stuff I used to, but I wasn't expecting a learning curve like this.

Open house tomorrow for the kids to meet their new teacher. I should be able to make it to the end of it. Charles will take them first, the nanny will meet halfway through (since the teacher should know her too), and then I'll be there at the end. I can't believe they start full time on Monday. That reminds me that we forgot to tear off the "Thursday" chain for their countdown.

First day of chemo and radiation combined

Well, yesterday was my first radiation treatment. You can read about it here. Today I found out they are doing 30 treatments instead of 33, so I have 28 left. Last day is scheduled for September 30th. I had discussed 33 treatments with the oncologist to try to spread out the dose and lower the chance of long term side effects according to the Baltimore Hopkins specialist. The local oncologist is out this week, so I talked to another doc in the office. I see my own doctor next week and need to clarify with her why she changed her mind.

I got another info packet on the procedure and side effects of the radiation. It seems I have another 10-14 days left with my hair in tact. I'm already working on one beanie for myself and got a beautiful knit hat from a friend back when this all started. I'm hoping the weather turns cold in September so I don't have to do that "I have cancer" head scarf.

After fighting with the insurance all last week to not only approve the chemo meds but to get them to overnight ship it, I ended up getting it in the mail early enough this morning to start today. I did take the anti-nausea meds too so no nausea so far. As much as I hate the insurance battles, it's so worth it. We're paying 50 cents each for a medication that out-of-pocket costs $309 for one pill. Yup, over 12 grand out-of-pocket for a 42 day treatment (like mine) for people who don't have insurance. This is one big example of the broken healthcare system. I can't imagine how screwed we'd be without good benefits. I have no idea what the radiation treatments cost without insurance.

I've also been battling with my long term disability insurance company. They are trying to say that because I was being treated for migraines before I was effective on the policy (a couple months after I restarted full time) that they don't have to pay the benefit due to some "pre-existing conditions" bullshit. A claims adjuster friend has told me that because the diagnosis wasn't until after the effective date that I should still get benefits. I hope so! Otherwise, we'd have a month lapse in disability payments. However, I do have an amazing employer with even more amazing coworkers who have donated paid time off for me. So if we have to, I'll have them apply a few paid time off hours per week so we'll continue to have some income until I go back full time mid-October.

Insurance. Blessing and a curse at the same time, really.

First radiation treatment

Finished the first treatment of radiation therapy. It didn't take long. I got there early and waited a bit until it was my turn. Luckily, I don't have to change into the hospital gown. I got a little shock while waiting when the little old guy before me went into the room with the back of his gown open!

I laid on the table and put my head on the little clear plastic positioner at the left of the picture. They put my specially made mask over my head and clamped it down to the table. I can breathe through it but I can't see. It's so tight that I can't open my eyelids. They did the quick CT scan for positioning, then the actual procedure. It was only a few minutes. I couldn't tell what was actually happening, I could only see when large things blocked the overhead light. Thank goodness for ativan. Otherwise, I probably would have had a panic attack in the machine.

It was over in about 15 minutes start to finish. Repeat 32 more times. The longest part was probably finding a spot in the parking garage and then waiting for my turn.

I'm still struggling with the insurance company about delivering my meds. So I wasn't able to start the chemo today. If it gets delivered tomorrow afternoon, I'll start it Wednesday morning. The chemo oncologist said that is fine, since the chemo is really to help make the cancer cells more sensitive to the radiation, so it's most important at the end for the "harder to treat cells". I do have all the other meds; anti-nausea, antibiotics, pain killers, and anti-anxiety.

Grace and Liam start school a week from today. I'll be walking them over before I go to my appointments. So far, I'm confident I can drive myself. We'll see how it goes as time goes on.

Meds and Party, but not together!

I've been so busy this week between appointments, errands, and phone calls. It feels like a full time job. I seriously have no idea how I got it all done when I was working. And I'm also seriously grateful I still have the ability to drive.

One of my errands was to Home Depot to pick up a lockbox for my medicines. We have our own private bathroom that the kids don't use, but they still have access to it. Right now, the meds are on top of a set of drawers on the side of the sink (the big counter top side). My kids aren't climbers but if they're really motivated, I'm sure they could get up there. The meds all have the childproof tops, but since Grace opened the bottle of vitamins with a "childproof" lid last night. I know that's no longer a safety net. I'm not too worried about the meds I have up there right now as they're all not life threatening unless they take the whole bottle. I'm mostly worried about the chemo pills. Those will come in the individual packs where you peel back the paper and pop the pill from the aluminum. The nurse suggested popping it into a little cup and swallowing it from there because you shouldn't be handling it with bare skin. Remind me why I want to put this in my body again?

G&L turned 5 last week, but their friend party is this Sunday. They're super excited. I'm still trying to get done cakes, snacks/drinks, and favor bags. It's superheroes and princesses, so I got some green and pink rock candy sticks for the favors so they'll have respectively kryptonite and princess wands in little bags. I thought it was creative.

2 more "sleeps" until their party and 3 more until my first radiation treatment. Still doesn't seem real.

Ramblings

I haven't written in a while because I don't really have that much to say right now. We were at the beach for a week and a half. Those of you with young kids know that "vacation" no longer means "restful" so I'm pretty much just trying to get over the exhaustion from that. It's nice to get a full night sleep in my own bed. I'm also running errands like mad before my daily treatments start next Monday and then school starts for the twins the Monday after.

I went for a 1.5 mile "run" this morning that was more like a walk/jog. It was a similar route to the one I did before the surgery that set off my biggest headache. I need to keep working out. "They" say it will help with the fatigue.

I've had my first follow-up MRI yesterday but won't have the report from that until at least early next week. I went to see the chemo oncologist and had a "chemo ed" appointment today to learn all about that. I have 3 scripts now in hand and waiting for the actual chemo meds in the mail in the next week. One of the scripts is for ativan, which I will probably take Monday morning before my first radiation. I will otherwise most likely have a panic attack in the machine, which sounds unpleasant.

My surgery team at Hopkins followed up with me today. That was really nice. They're on top of it!

The second radiation oncology consult

I wrote about going to this appointment but then I didn't actually write about it. This was the "second opinion" but also the "getting to know the local team" visit. It's technically a part of the Johns Hopkins system; they can pull up my JH records electronically. However, they are also technically run out of Suburban Hospital.

I met with a female oncologist, Dr. H, who had excellent bedside manner and seemed very knowledgeable. All the information was the same as the last radiation consultation, same info on procedure and side effects (long and short). When I asked her point blank, "After seeing my images and reading my reports, is your recommendation to do the treatment?" she said a definitive "yes" and cited the same reasons as the other specialists. They have 1 machine that is 10 years old and another that is new in the last year. The newer one "does a quick CT for positioning" before the actual radiation treatment that only takes about 2-4 minutes. Of course I requested the new one and she said that all brain cancer patients get the new machine since the disease a lot more position sensitive than other parts of the body. Yes, I would think so.

Since that was the afternoon before we were leaving for 1.5 weeks that same evening, she said if we were going to start in August that I needed to do the CT scan immediately for their week long planning/mapping process. They squeezed me in before the tech took down the machine for the night.

I have a new mask. It's a serious Hannibal Lecter type of thing. Imagine a big blue hard plastic horseshoe, big enough that it would go in an arch over your head from the end of your jaw, over and back to the other end of your jaw. Then attach a plastic mesh in the middle of that horseshoe. Have you ever had a plastic cast made? It's like that. They put the plastic in warm water to make it moldable, then he stretched it a little bit before laying it over my head. I am not joking when I say it covers the whole scalp and face, from the crown of the head to under the chin. He formed it over my head and let it cool, tugging on the nose area every once in a while to make sure I had a good pocket to breathe.

It's extremely claustrophobic. He let it harden completely while they did the initial planning CT scan. Did I forget to mention that the blue plastic horseshoe is literally clamped to the table? Then he marked the mask with axis's to make sure it lines up perfectly in the machine every time. This is my new mask that I get to wear for about 20-30 minutes daily for 6 weeks. They put it over my face and clamp it to the table to position me for the radiation therapy treatments. I'm pretty sure I'll be taking a xanax before every appointment!

T minus 12 days to treatment 1.

As time grows near

I shouldn't have done it but I was up really late last night, reading brain cancer blogs. I'll admit, this time I'm more nervous about the upcoming treatment than I was before the surgery, or at least nervous a lot earlier. The treatments aren't for another almost 2 weeks, however, the more I read about them, the worse it seems. Everyone hears about how cancer patients go through hell and I heard about all the side effects from the specialists, but reading first hand experiences really hits it home. It will be a hard 6-8 weeks and then another hard 6 months. I'm doing this to extend the time before regrowth, I want to be around for my family for a long time. I will also admit that it freaked me out when some of the blogs had a final entry from family members that the person had passed away, although encouraged that some of them were after 7-10 years.

We may need to fire up the care calendar again. I may be able to drive myself to my appointments, but I also may not. We're hoping that I remain seizure-free, but the treatment does cause some brain swelling so we really won't know until a few weeks in. It might also exacerbate my headaches so if I'm on pain killers, my reactions might be dulled which means I probably can't drive until it wears off. I could probably wait until after the treatment appointment to take the meds though so really we just need to see how it goes first. It's about 1.5-2 hours round trip 5 days a week. My appointments are only 20 minutes long once I get there and it's about 15-20 minutes each way drive. I already have them scheduled for 10am most of the time and one week of 11am (due to the machine's schedule) starting on August 19th. That gives me time to still walk G&L to school before leaving every morning, which we were trying to work out with my work schedule anyway.

C's 30th birthday is at the end of the month. I feel badly that he'll always remember his 30th birthday as the time his wife started radiation and chemo, but there's really no way around it. I'm just going to try to do something fun so that it doesn't pass by almost unnoticed.

A hard decision

For the majority of the last week, I was fairly certain I was going to choose to put off the follow-up treatment as long as possible. As we get more information and talk to all of my physicians again, it's becoming clear that I will need to do the treatment sooner rather than later. "Sooner" meaning pretty much immediately.

The surgeon still says "Personally, if it were me, I would wait until signs of regrowth" because it was a "radical" surgery where most of the tumor was removed. However, he has also talked to all the specialty doctors and "the majority" of them recommend the adjunctive therapy (chemo/radiation). The chemotherapy oncologist is adamant that early treatment will postpone the time before regrowth, saying that it's better to treat it when there are less cells. However there is no definitive data on that theory. Grade 2s don't respond to therapy the way that grade 4s do, but there is little to no research on grade 3s, since they make up very few of the overall number of brain tumor cases. He also says Dr. O is "just" the surgeon and doesn't know everything about the post-surgery treatment. How's that for ego?

So my case was taken to the tumor board on Monday and what the surgeon called "the tumor convention" this week where he consulted with all the specialties. Since it is a grey area of borderline grades 2 and 3, it's considered a unique case. They do know that there are some anaplastic cells that are considered malignant and can grow quickly. The chemotherapy and radiation therapy work well on those fast dividing cells, which are the most aggressive to begin with. The benign cells are less worrisome but they are hoping the treatment will get rid of as much of both types as possible. With the fact that I'm young and fairly healthy to begin with, they expect very little, if any, long term effects from treatment. The worst part will be the immediate effects.

What we've learned about this so far:
The overall group name for this tumor is Glial Tumor because it occurs in the Glial cells of the brain.
Grade 3 is technically called "anaplastic astrocytoma" and considered malignant.
Astrocytomas are the most common central nervous system tumor.
Grade 3 astrocytoma is "rare" compared to other grades/types and only accounts for 2% of all brain tumors.
Positive MGMT methylation indicates how well chemotherapy will work (mine was positive).
My surgery was considered a "gross total resection", the best possible outcome.

I basically am coming to terms with that fact that I have brain cancer. It's scary, but it's also one of those things people just have to deal with. There's no other way but to do what we can and hope for the best. Modern medicine is amazing. My surgery proved that. The treatments are improving every year. People with this disease are living longer. The emotional journey will be hard. It will be difficult to go through these intense therapies without proof that it's working, but we'll make it through.

I'm currently trying to keep my physical health improving. I jogged 2/3rds of a mile outside this week and it wasn't totally awful. It's an improvement, even over the ones where I walk 2 miles per session. The last time I ran, I had a debilitating tumor-induced migraine for over 24 hours so I was nervous this time, but I feel really well. I am still going to keep up with my exercise routine.

On a different but not completely unrelated note, I'm going to start crocheting again. I bought some soft chunky yarn to start with. I remember the beanie hat not being too difficult so I'll start with that, maybe embellish with a little strap over the forehead or a shell pattern rim. I haven't actually started yet because I need to re-familiarize myself with how to do it, more youtube videos and some practice. It will be a good fine motor skill exercise for me.

In the meantime, we're continuing on as normal here at home. As I spend more time studying for my certification test, it's becoming *very* apparent that I haven't taken a formal math class in over 12 years. Oh what's that, past self? You say you don't want to take another calculus course in undergrad because it's too hard? Yeah well, bazinga, present self! I have a feeling I have more schooling and prep courses in my future. I am also thinking this October will not be the test that I take to get my certification. Maybe in April next year, depending on how the six 4 week chemo treatments go. 

The kids are still doing well. Our nanny has been an awesome constant source of normalcy for them. They are looking forward to seeing Grandma, Grandpa, Aunt Lauren, and cousins this week. I'm looking forward to some newborn cuddles now that I'm officially allowed to carry his weight around (the little moose!). I'm still planning to walk Grace and Liam to school on their first day the last week of August. I'm excited to give them the bikes and backpacks for their 5th birthday next week.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.