Overall, government shutdown notwithstanding, January was an excellent month. I felt better than I'd felt since May! You hear that mom, I used the word BETTER! It was exhilarating to think about others and spend a bit of energy making others happy rather than being so darn self-focused. My neighbor and friend had a baby (Congratulations, K family!) so I made them some treats and held the baby for an entire afternoon. Also, the girls and I hosted my friend M, her two daughters, Aunt J, and my MIL for a spa and spaghetti night. AND I made an escape room activity for my kids and two of their friends. My friend, A, helped me with it and it was awesome. The theme was a trip to Paris, and their plane crashed just off the Canary Islands. While they were stranded on the Canaries, Mt Teide erupted (baking soda and vinegar experiment). When they finally made it to Paris they visited the Louvre and Champs de Elysees. They had numerous puzzles to solve along the way. It took them an hour to complete the "escape room".
And then...a minor setback! Last week I either ate something bad or picked up a stomach bug. Regardless of the cause, the result was mild dehydration, which of course led to dizzy spells. I've been rocking the BRAT diet to try and get things back in order. It has been harder than it sounds, likely because of all of the fancy pills I take every day (neratinib, roids, antibiotics, etc.). And now today I have a sore throat and a cough! Bummer. These ordinary ailments have me zapped. But I'm getting plenty of fluids and rest, so hopefully I'll kick em soon.
I saw Dr. Radiation Oncologist last week. He too was delighted with the January MRI of my brain. Oh, and when I saw Dr. Oncologist earlier this month, she skipped into the exam room and invented a word. She said that this was the "bestest" news she's had for me all year. So guys, whole brain radiation worked for me!! I asked Dr. Radiation Oncologist to explain what is so great about this result. He said the perfusion (blood flow) to the tumor is significantly decreased, and the diffusion (area of the tumor) is not increased. Hopefully it stays that way for awhile!
Today is a polar vortex day! Feels like -37F outside with the windchill. Schools are closed and folks are advised to stay indoors. Ok!
Wednesday, January 30, 2019
Thursday, January 3, 2019
Nearly jubilant
It was a good but tiring day today! The spouse and I hit the road after he walked the girls to school, we listened to comedy downloaded from Spotify, and ate brunch in the distant town before the appointments started.
The MRI of my brain went off without a hitch. At first it looked like the phlebotomist was going to have trouble finding a vein for injecting the contrast, but then he switched arms and had no troubles. Usually I like a silent scan, but this time I opted for music in my headphones. Adele set Fire to the Rain, and I don't remember what other songs played but the scan only lasted about 5-6 songs.
Then we trekked through the hospital to get the results from Dr. SRS Expert. First his two new residents came in, and it was apparent that they were new. The previous resident we'd interacted with was a senior resident, and these residents were...whew. Brand new, perhaps. Not on top of their game today, and indeed put us off of our game a little bit. They came in making excuses about having gone into the wrong room first (something about going into a room with Dr. Allen instead of Mrs. Allen...I decided not to confuse them further by pointing out to them that I'm both) and in their blustering failed to introduce themselves. Then they asked me a lot of questions about how I'm doing, and suggested that maybe my ear fullness is due to the common cold? But I don't have a cold! Then they pulled up the pictures and were excited to share the "good news" with me but didn't really explain the good news. Fortunately Dr. SRS Expert wasn't long behind them, and he too was very optimistic about the results of the scan. As with previous scans, the good news is in what ISN'T there--no new tumors. I'm getting the feeling that this is an atypical result! He was nearly jubilant about this. I must be sure not to take this for granted, even though it is clearly my expectation that I will not sprout more tumors (we've done radiation twice, I'm taking neratinib, and I have no cancer elsewhere). And really, if Dr. SRS Expert is pleased with the results, then that's all there is, there isn't anymore. It sucks to leave the exam room on a note of ambiguity, which is what we did last time. The next scan is not until April.
The additional good news is that Lloyd is not bigger, and is in fact smaller in important ways. The part of Lloyd that was growing looked kinda like a tail, and that tail is much reduced. It's more of a nubbin now, not tail like at all. So...whole brain radiation did its job! Huzzah! (We don't yet have the blood flow (perfusion) results, but unlike previously, Dr. SRS Expert didn't hold back his interpretations. I'm not sure why.)
Neutral news that is not surprising is that my brain swelling is unchanged. I updated him on my steroid status and said that my head is feeling halfway decent lately, and he said something about the steroid dose being pretty good for now then. I just reduced the dose a few days ago, so I'll hold here for a week or so then try to cut another half a milligram. Maybe I won't be able to get off of them completely, but I'll keep trying. I'll just listen to my head.
We briefly discussed the fatigue, and he said that it could continue for up to 6 months, but then he pointed out that I'm young so maybe not quite so long. I countered that I'm almost 40! But I was joking; I know that I'm young, and I also know from previous cancer treatments that yes the fatigue will linger, possibly for up to a year, but it will get easier here pretty soon. Eventually it'll shift away from all-day fatigue and into a type of fatigue that allows for more functions but makes my days shorter and my nights longer. That'll be easier for this wife/mom/daughter/sister/friend/scientist to work with. Right now I'm still pretty darn tired all darn day! And even if I start out with some energy, I'm easily depleted after a little exercise or family time. But I'll take it! I'm living with cancer, not dying from it. I feel like I'm doing pretty awesome, in the scheme of things, in my slow and nappy way. Thank you all for being patient with me!
The MRI of my brain went off without a hitch. At first it looked like the phlebotomist was going to have trouble finding a vein for injecting the contrast, but then he switched arms and had no troubles. Usually I like a silent scan, but this time I opted for music in my headphones. Adele set Fire to the Rain, and I don't remember what other songs played but the scan only lasted about 5-6 songs.
Then we trekked through the hospital to get the results from Dr. SRS Expert. First his two new residents came in, and it was apparent that they were new. The previous resident we'd interacted with was a senior resident, and these residents were...whew. Brand new, perhaps. Not on top of their game today, and indeed put us off of our game a little bit. They came in making excuses about having gone into the wrong room first (something about going into a room with Dr. Allen instead of Mrs. Allen...I decided not to confuse them further by pointing out to them that I'm both) and in their blustering failed to introduce themselves. Then they asked me a lot of questions about how I'm doing, and suggested that maybe my ear fullness is due to the common cold? But I don't have a cold! Then they pulled up the pictures and were excited to share the "good news" with me but didn't really explain the good news. Fortunately Dr. SRS Expert wasn't long behind them, and he too was very optimistic about the results of the scan. As with previous scans, the good news is in what ISN'T there--no new tumors. I'm getting the feeling that this is an atypical result! He was nearly jubilant about this. I must be sure not to take this for granted, even though it is clearly my expectation that I will not sprout more tumors (we've done radiation twice, I'm taking neratinib, and I have no cancer elsewhere). And really, if Dr. SRS Expert is pleased with the results, then that's all there is, there isn't anymore. It sucks to leave the exam room on a note of ambiguity, which is what we did last time. The next scan is not until April.
The additional good news is that Lloyd is not bigger, and is in fact smaller in important ways. The part of Lloyd that was growing looked kinda like a tail, and that tail is much reduced. It's more of a nubbin now, not tail like at all. So...whole brain radiation did its job! Huzzah! (We don't yet have the blood flow (perfusion) results, but unlike previously, Dr. SRS Expert didn't hold back his interpretations. I'm not sure why.)
Neutral news that is not surprising is that my brain swelling is unchanged. I updated him on my steroid status and said that my head is feeling halfway decent lately, and he said something about the steroid dose being pretty good for now then. I just reduced the dose a few days ago, so I'll hold here for a week or so then try to cut another half a milligram. Maybe I won't be able to get off of them completely, but I'll keep trying. I'll just listen to my head.
We briefly discussed the fatigue, and he said that it could continue for up to 6 months, but then he pointed out that I'm young so maybe not quite so long. I countered that I'm almost 40! But I was joking; I know that I'm young, and I also know from previous cancer treatments that yes the fatigue will linger, possibly for up to a year, but it will get easier here pretty soon. Eventually it'll shift away from all-day fatigue and into a type of fatigue that allows for more functions but makes my days shorter and my nights longer. That'll be easier for this wife/mom/daughter/sister/friend/scientist to work with. Right now I'm still pretty darn tired all darn day! And even if I start out with some energy, I'm easily depleted after a little exercise or family time. But I'll take it! I'm living with cancer, not dying from it. I feel like I'm doing pretty awesome, in the scheme of things, in my slow and nappy way. Thank you all for being patient with me!
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| Puerto Rican rainbow, somewhere in this picture (sadly it's not showing up on my computer screen, but I can see it on my phone screen). My friends S&B are in Puerto Rico now, and my Dad and bonus mom are headed to the Dominican Republic tomorrow. Enjoy the beach, lovies!!! |
Tuesday, January 1, 2019
Superhealer with only minor glitches
Happy New Year everyone!! I hope that you all have had a healthy and joyous December celebrating that which you celebrate. We celebrated health, and life, and family, and nourishment, and nature, and recreation. And probably other things, but these are the themes I picked up on.
I had a couple of doctor's appointments in mid-December, and at one of them I passed my brain test with flying colors! Dr. Radiation Oncologist tested my brain with various physical tests: I had to follow his finger with my eyes, turn my head as instructed, kick my legs as instructed, and stand with my eyes closed and my arms out in front of me without falling over. And I could do all of these things! So, no brain damage from radiation has manifested yet! Huzzah!!!!
The glitches I've experienced are likely from other damaged parts, namely my ears. My ears have a very loud ringing in them, and the left one in particular feels very full; more full than it did before whole-brain radiation. The result is that I am very susceptible to motion sickness and mild dizzy spells if I move too fast or too much. The good news is that if I sit down for awhile or take a nap, I feel much better. I consider this to be a pretty minor glitch in the scheme of things; I feel extremely grateful that after everything my brain has been through, it still seems to be functioning "normally". The doc told me to keep doing what I'm doing! So...we're on the right track with the healing thing!
My watery eyes seem to have resolved. My tastebuds are still not normal. My hair is not growing back yet. I don't have much energy yet, but I have resumed some gentle aerobic exercise in hopes that that will help. It seems to me that too much of being sedentary feeds more sedentariness, but I'm still taking it easy. The body's messages are pretty clear right now.
My potassium is low for some reason. I was told to eat bananas and potatoes to get it back up, and Dr. Google also suggested beets and spinach and beans and tomatoes. These are all things I already eat quite a bit of! Low potassium is giving me foot and hand cramps (my left index finger completely seized up the other night when I was trying to floss!) and tingling in my hands, so I'm trying to eat MORE of these things. Should be easier to do now that the holiday food fest is over.
One night at dinner my nose started bleeding. The kids were moderately alarmed, but it wasn't a bad nosebleed. The radiation damaged my sinuses. I was told to put some Aquaphor on a q-tip and gently put some up there. That seemed to resolve it pretty quickly. I didn't really have any further nosebleeds.
I'm messing with the steroids! I'm down to 1.5 mgs in the morning AND evening! This is an achievement! I just achieved this yesterday, so hopefully it goes okay--I tried this before Christmas and had two super crummy days and so bumped the dose back up. So far, crumminess is less. I have an MRI on Thursday, so we'll see what that shows. I'm hopeful for a dead Lloyd and reduced swelling!!!
I had a couple of doctor's appointments in mid-December, and at one of them I passed my brain test with flying colors! Dr. Radiation Oncologist tested my brain with various physical tests: I had to follow his finger with my eyes, turn my head as instructed, kick my legs as instructed, and stand with my eyes closed and my arms out in front of me without falling over. And I could do all of these things! So, no brain damage from radiation has manifested yet! Huzzah!!!!
The glitches I've experienced are likely from other damaged parts, namely my ears. My ears have a very loud ringing in them, and the left one in particular feels very full; more full than it did before whole-brain radiation. The result is that I am very susceptible to motion sickness and mild dizzy spells if I move too fast or too much. The good news is that if I sit down for awhile or take a nap, I feel much better. I consider this to be a pretty minor glitch in the scheme of things; I feel extremely grateful that after everything my brain has been through, it still seems to be functioning "normally". The doc told me to keep doing what I'm doing! So...we're on the right track with the healing thing!
My watery eyes seem to have resolved. My tastebuds are still not normal. My hair is not growing back yet. I don't have much energy yet, but I have resumed some gentle aerobic exercise in hopes that that will help. It seems to me that too much of being sedentary feeds more sedentariness, but I'm still taking it easy. The body's messages are pretty clear right now.
My potassium is low for some reason. I was told to eat bananas and potatoes to get it back up, and Dr. Google also suggested beets and spinach and beans and tomatoes. These are all things I already eat quite a bit of! Low potassium is giving me foot and hand cramps (my left index finger completely seized up the other night when I was trying to floss!) and tingling in my hands, so I'm trying to eat MORE of these things. Should be easier to do now that the holiday food fest is over.
One night at dinner my nose started bleeding. The kids were moderately alarmed, but it wasn't a bad nosebleed. The radiation damaged my sinuses. I was told to put some Aquaphor on a q-tip and gently put some up there. That seemed to resolve it pretty quickly. I didn't really have any further nosebleeds.
I'm messing with the steroids! I'm down to 1.5 mgs in the morning AND evening! This is an achievement! I just achieved this yesterday, so hopefully it goes okay--I tried this before Christmas and had two super crummy days and so bumped the dose back up. So far, crumminess is less. I have an MRI on Thursday, so we'll see what that shows. I'm hopeful for a dead Lloyd and reduced swelling!!!
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| Happy holidays!! |
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