Monday, March 25, 2013

Less Complaining, More Explaining

So my last post, while very cathartic for me to write (and complain about what I could), wasn't very informative to how my life is going right now. So I'll try now...
Easy Chemo - So I talked about how this isn't as bad as regular chemo, but not really how. Regular chemo is like a poison that attacks all fast growing cells in your body. This includes cancer cells, hair cells, stomach lining, immune cells, etc. So that's why people going through chemo generally loose their hair and are sick a lot. Herceptin, my easy chemo, isn't like that. It only attacks the cancer cells, because of those great receptors on them. Don't ask me how is does it, but imagine puzzle pieces that only kill what they can attach too. Or, you know, whatever works for you to imagine. So that leaves my hair and most everything that isn't cancer alone, though it does give me a runny nose and a funny taste in my mouth.
Radiation - This is what is going to cause me to loose some of my hair this time. From last time around, they zapped half of my left armpit, so I only have to shave the other half these days. When an area the grows hair gets radiated more than 2 weeks, it will lose any hair that grows in that region. Now they are just doing small areas of radiation on my head, shaping them according to the MRI for where it needs to be. So I won't lose the whole bottom inch of my hair line, but will loose swirls and such. This is a big bummer for me right now, because it is starting to fall out, and I know it won't come back. But the affected areas are on the back of my head, so I won't be able to see the lack of symmetry. Thank goodness, because that would really get to me. And WonderfulHubby said if it really bothered me once it is done falling out we can look into hair plugs. So that was very sweet of him to try and help me feel better like that.
Otherwise the radiation causes some mild swelling in the brain area, so I kinda feel like I have a pressure headache coming on, that never really comes (which is nice, no big headaches). The swelling also causes the nausea I talked about in the last post. This has gotten alot better. I was actually sick last Wednesday or Thursday, and have been okay since then. My stomach is kinda in this middle ground of not being actually happy, but not being actually nauseated. So I'm kinda picky about what I eat, but I'm losing some weight, which is a kinda nice silver lining, but I'd still rather be okay all around.
And the fatigue has hit me full force this weekend. I've been taking naps as I could, and just doing very little else. I am thankful WonderfulHubby understands! I try to make sure the dishes get done, and other than that, the chores that get done are what the kids can do. Thank goodness they are good kids.

Thursday, March 14, 2013

Radiation should be a 4 letter word

I started radiation on March 6th. The first visit was a little longer because they had to take extra films (like x-rays) to make sure everything was lining up like it had before. They told me then I would have to come for 20 visits, so that's only 4 weeks (with 5 visits a week on week days).
Now from the title, don't get me wrong, because I really do like all of the people at the radiation department, they make it more enjoyable. But going every weekday does not give you a week day that you feel normal, a non cancer person. And last Friday I started feeling nauseated. They gave me anti-nausea pills, which are good and helpful, and after the first day I was able to eat more normally, but food still seems like something I have to carefully choose. And that is kinda ok, because I have started loosing some of the poundage I put on since the surgery, but DARN IT! I would rather loose the weight by feeling good and exercising, not by feeling like I should get a baby in 9 months...
So I'm tired, and that makes me cranky. And apparently too lazy to remember to write an update (sorry!!), but otherwise it's going okay. I haven't had a claustrophobic reaction to the mask, which apparently some people do, which I can kinda understand. And I have been eating a lot of yogurt, and thankfully that has helped with the nausea, so I don't feel actively nauseous.
Today was extra hard because I had my easy chemo treatment after radiation, which usually isn't too big of a deal. But they had a hard time trying to get the IV started because they had used that vein to draw blood for regular blood tests, and so I passed out. Luckily they had already removed the needle, and another nurse was able to nicely find a vein in my hand.
But today I am done. Not in the "yippee, let's celebrate!" way, but in the "just shoot me now!" way. I'm sure I'll feel better tomorrow after a good night's sleep.

Wednesday, February 27, 2013

Getting Masked and Easy Chemo

So on February 22 I had an appointment in the Radiation Department to get fitted for a couple of masks.  They don't do tattooing for brain tumor radiation, what with hair cover the back of your head and people feeling funny about a black spot on their cheek or eyelid. So the masks - these started out as flat, hole-filled plastic sheets that are almost see-through. I laid down on a board in the CT scan room, and got my head in a comfy position. They put a plastic sheet in hot water to soften it. When it was soft enough, they pulled it out and shook it a couple times. Shaking it got rid of extra water droplets (they put towels all over the floor) and also balloons it out, to get the forming started and maybe make it easier.
Not my mask, but this is what
the small one for MRI's looks like.

So I laid still while they placed the mask over my head and screwed it into the board I was staying on. It started out feeling just a little too hot for comfort, but quickly cooled to nice and warm. Then they started forming it to my head, pressing in here and there, pulling up a bit on the plastic around my nose so if it tightened as it cooled it wouldn't smush my nose. Then they started putting cloths from an ice water bath on top of it to make the plastic set. They mostly wrung these out, so I didn't get too wet. They started with a smaller one to use for my frequent MRI's I'll be getting over the next few months. The elongated head shape reminds me of the creature from the move "The Abyss." Then we repeated the same process for the radiation room. This one started down at my shoulders and came up. They had asked if I was claustrophobic, and I didn't think I would be, and I wasn't. They were talking the whole time, and if I cracked and eye open I could kinda see through the plastic. And with all the holes in it my breathing wasn't constricted at all, so that made it very livable.  They took a CT scan while we were there.
Not my mask, but this is what the big one
they use in radiation looks like.

After that we went down to the MRI department and tried out the MRI mask. Worked like a charm, and boy are those MRI's noisy! They gave me ear plugs, but it was still pretty loud. CT scans are much quieter. And I found out (and was reassured before the MRI) that the titanium screws the Neurologist used to hold my skull in place are not magnetic. So I may not set off the Airport security next time I fly, hopefully!  ;)

Then we went back to Radiation (I got to ride in a wheel chair coming and going because it's hospital policy), and I got dressed. We set up an appointment for me to come back and get started with the treatments. They are going to have to wait for results from the CT and MRI to determine my full plan for the radiation. I guess it depends on how many cancer cells were left after the brain surgery (cause they try to get them all but don't take extra good brains cells at all). And also to figure what angles they will need to radiate me from so they hit mostly only where the cancer was. The first day is Set for March 6th, and I'll go every week day after that, but I don't know for how long yet. My wonderfulmommy is coming up to take me to the first visit because it'll probably give me a headache. After that I should be able to drive myself just fine (I asked specifically).

Then I went over to get my first easy chemo treatment. I waited for about an hour to meet with Dr. Hansen so I could ask how long I would have to have these treatments. He said it would go at least as long as the radiation treatments (I'll have one chemo treatment a week during radiation), and then we'll see from there. That's been the more frustrating part of this brain tumor, the Doctors can only make initial plans, everything from there is wait and see how it responds. Sigh, oh well.

So because we had my port removed way back when (I guess I didn't blog specifically about that, silly me), the nurse just started an IV in my right arm (because the left arm is a no-no for those things since they removed the lymph nodes). The first treatment took an hour and a half (it's a bigger dose to get started), so I had to keep my right arm mostly still for that long. After about an hour of room temperature liquid going into your veins, you feel really cold, so I asked a passing nurse to hand me one of the many fleece blankets they have in the room for patients. The visit this week (and all the following) should only be about a half an hour long, so that'll be good. I can choose to get another port-a-cath placed, but that's a whole other surgery, and even though its a quick and easy one, I'll probably avoid it because I can.

Anyways, the treatment went well, I went home feeling fine. I woke once in the night to use the bathroom and felt nauseous then, but was able to just go right back to bed and back to sleep. Yay!

Oh, and I am down to just ibuprofen and muscle relaxers during the day! I will take a quarter of a percocet when I need to at bedtime, but I was able to skip that last night too, so hooray!

I believe that's about it, love you all!

Thursday, February 14, 2013

Met with Chemo Doctor Today

So today WonderfulHubby and I went and met with my Chemo doctor, Dr. Hanson. It was probably one of the quickest visits I have ever had with him (he's a pretty busy guy and I often had to wait an hour to see him). He is such a nice guy and said how sorry he was that we had to meet again (at my three month checkups I see his PA). But also that a lot of progress has been made since I went through treatment 3 years ago. My cancer cells have HER-2 receptors, which is great because they have a medicine that specifically attacks cells that have those receptors called Herceptin. This is the chemo drug that I did for a full year that doesn't make me sick or my hair fall out. We learned today that just because something is in the bloodstream, doesn't mean it gets into the brain cavity at all. There is a blood/brain barrier that most things (chemicals, bacteria, etc) don't cross. This includes chemo drugs, so that's why the chemo didn't get these silly little cancer cells that had broken off and run away to the brain before we started chemo. (This is why the cancer cells never showed up in the blood work we would do at the three month checkups.) But having the brain surgery and also when we have the radiation, will break down that barrier so that the chemo drugs will get into the brain. He didn't say how long we will have to do the chemo, but it will be at least another year I am sure. Also, he talked about how the FDA has approved a drug that is a stronger chemo drug that is combined with the Herceptin to specifically attack these cells, that has been successful for more aggressive HER-2 cancers. And another one that hasn't been FDA approved yet, but has taken a chemo drug that was too devastating on its own to be FDA approved. But they have been able to combine it with Herceptin so that it only targets theHER-2 cancer cells. Yay for advanced science that found the HER-2 receptors! He said I don't need the more aggressive drugs now, and that we will just do the Herceptin starting right away, and the localized radiation once I have healed enough from the surgery. Yippee!!

Sunday, February 10, 2013

Just a thought

Asking why bad things happen is like riding a boat in a whirlpool.  You don't get anywhere and it just makes you feel bad.  Bad things happen. Take them as they come and start from there, move on.

Friday, February 8, 2013

Great News!

We went in and met with the Radiation Oncologist today. She had the results of my full body scan. The cancer was only in the brain, so it wasn't anywhere else. This is good. Very good. I will still need to continue to heal from the surgery (and that's going well), and then we will come up with a treatment plan that will include hopefully just localized radiation and easy chemo. The radiation will probably cause headaches and hair loss, but we won't start that until I am well healed from the brain surgery. We will meet with the chemotherapy oncologist on February 14th to talk about what treatment we will want to get started with. 
So because this cancer is my breast cancer again, it had broken off into the blood stream or lymph fluid and hid in the brain before chemo and radiation. And most chemotherapy does not travel to the brain very well at all, so that's why it wasn't wiped out. But since my cancer is HER2 positive, which is treated by the "easy chemo" drug called herceptin that does travel to the brain, I am hoping that we can do the easy chemo right away and not worry too much. 
We will be doing frequent MRIs (at least every couple of months for the first while) to monitor any tumor growth because they don't go in and willey-nilley cut out good brain so they don't go as much as a border as they do when it is just breast tissue (we can totally get along without that, lol).

Wednesday, February 6, 2013

It's Back. Kinda

Where to start… Some of you may know a bit, some may know nothing at all, we have talked to a few and let word trickle out because that was easiest for us. The news is, I just had a brain tumor removed.
It started with intermittent, but persistent headaches in November. I was still functioning just fine and taking ibuprofen when I saw my doctor for a check-up in December. We talked about the fact that headaches are fairly common for me, and I was starting to get ready to work for H&R Block and stress levels and stuff, and figured it was a tension headache. Over Christmas Break I started feeling worse, kind of cotton-headed and tired, and the headache was more persistent. I went in and saw the doctor again and we ran through the gamut of neurological tests (squeeze my fingers, does anything feel tingly, touch your finger from your nose to my finger, etc.). I passed fine and got a couple of tension shots at the base of my skull to see if that would help. It helped the pain on one side, but not the other.   I saw the chiropractor a few times, but that didn’t help. I would go and get a massage and that would help for a few hours. Around New Years, I felt the worst.  So dizzy I was sick. I spoke to my doctor on the phone and he said it was likely an inner ear infection along with the tension headache and to take some over the counter anti-nausea medicine and take it easy for a couple of days. As the dizziness got less, the headache got worse. The pressure built and bending over was a bad idea. I held my head very carefully and tried to move it as little as possible. Towards the end of January, I would work a half day at work and come home and rest. I had a day off on January 24th and was able to get in and see my doctor again. This time they asked if the headaches had woken me up at all. I said yes! Who knew that was a bad sign? That’s when they sent me in for an MRI.
Looking back it seems like we dragged this out, but getting an MRI is not cheap. We didn’t want to come out guns blazing if I was just going to have tension headaches for the rest of my life and just have to deal with them. It was very depressing to not feel like a fully functioning person. Brent and the kids really stepped up with helping out around the house in January.  I took Friday January 25th off and we went in at 7:30 pm for the MRI. After the MRI they had us wait while they tried to contact our doctor, but the one who ordered the test was out of town. They took us to the ER to meet up with the on-call doctor from our clinic so we could discuss what they found.
They found a tumor. It was on the left side in the cerebellum and about the size of a lime or small egg. It was pushing up against the drains for the venous cavity (a balloon like spot in the center of the brain) which made it difficult for the brain fluid in the venous cavity to drain. The radiologist wanted me admitted immediately, because of the pressure.  The neurosurgeon they had called said if I could walk in, I could walk out. The neurosurgeon put me on a high dose of steroids (4 pills a day) and sent me home. My parents took the kids for the weekend, and I became more of a person again as the steroids shrank the swelling, making the headache go away and the cotton-headedness subside.  We just stayed home and chilled all weekend. People at church knew I had been sick and being able to not give any more answer than I had a brain tumor didn’t seem productive and just exhausting.
Monday morning (January 28th) we met with Dr. Bryson Smith, the neurosurgeon. We scheduled the surgery for Thursday. I called into my jobs and told them that I had a tumor and would be having surgery. We went grocery shopping and cleaned house a bit, Brent went to work and wrote sub plans. I took the kids to school on Monday morning and told their teachers.  My mom went on a leave of absence from her work. My little sister Martha, who is single and lives in Michigan, was able to fly out Wednesday night.
The hospital called on Wednesday, we got an early arrival time on Thursday, 6:45 a.m. Having surgery is a LOT of “hurry up and wait”.  We got checked in, I got changed in to my surgical gown, and then they did another MRI (this one was for the computers that were going to guide the surgeons), which all took about 3-4 hours. Dr. Smith shaved a couple of little spots to place markers on my head for the MRI.  It was nice being on an IV and not getting hungry, and I was very glad Brent had found a book reader app for my phone.  We met the nice nurses and the anesthesiologist came and got me a little after noon. By the time they wheeled me to the operating room, I was done. Too much to think about and worry about, and I just started crying and thinking I didn’t want to be there. They were nice and I went to sleep right away.
I woke up after surgery in the ICU. We had a great nurse there, Rob, that was very attentive. I was in pain and they moved my IV so it worked better. I could move my feet and talk right away and that was excellent. I am sure I would have been happy if I hadn’t been so depressed about the whole situation. I was very clingy to Brent and thought about him spending the night in the ICU waiting room (because there wasn’t a place in my room for him to stay). But as the anxiety and anesthesia wore off I was able to be calm again and he was able to go home and sleep in our bed.  Brent stayed by my side and fed me ice chips, which were a blessed distraction.
I stayed in ICU until Friday night and they moved me into a regular room. By then, they just had me on oral pain relievers and a muscle relaxant.  Around that time I had a bowl of chicken soup to eat.
When I moved into the regular room I was able to walk carefully and slowly into the bathroom and back to bed. I didn’t have any real problem with nausea (hooray!!!) and was able to eat as I felt up to it. The doctors came and said the surgery went well, that they did a gross removal of the tumor. Initial pathology looks like it is the breast cancer, but we won’t know for certain until we meet with the doctors this week. The surgery went well, no side effects or need for physical therapy. The way I think of it is as a pushing tumor. So it did not consume or worm its way into different parts, just grew there like a lime. The neurosurgeon said my brain should slowly expand back out to its natural space, and I believe we won’t have any neurological side effects where we haven’t seen any yet.
I was able to come home Sunday afternoon from the hospital. Martha and my mom were both still here with the kids. Martha flew home Monday and Mom went home Tuesday. Brent will take off through Monday, when we visit with the neurosurgeon for the post op.
I have a full body scan scheduled for Thursday morning. This is when we see if there is cancer anywhere else. So we are currently in the “crisis averted, what’s next stage”. We will meet with the radiation oncologist Friday morning and figure that out then. Hopefully we will have the pathology on Friday when we see Dr. Ingersoll (the radiation oncologist), but will definitely have that back by Monday when we meet with Dr. Smith (the neurosurgeon).
The incision seems to be healing well; the surgeon was very nice and only shaved a very small area around the incision, so my hair covers it nicely.  So now we are just taking it easy, a pain pill and a baby step at a time. J