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.

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.

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!

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!!

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.

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).

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 24^th 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 25^th 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 28^th) 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

Bras... Ah!

Seriously, all my guy friends who read this, you can skip this, or not, but you may be uncomfy...
Okay, so I finally went in to get fitted for a bra, it's been about 2-3 years since I have, and now that things have settled a bit I figured it was a good time. WonderfulHubby came with me, and we went to the local JC Penney's.  The person who measured me was really nice, and told me I was wearing the wrong sized bra, namely the band size, I was wearing ones that are too small. And then I tried on a BUNCH of bras. Let me tell you, this was not fun. The "bad" side is flat faced and wide, and still fairly firm, so it doesn't squish into the cup like the normal side does, and some of the full cover bras had extra "poof-age" on that side. I had a few mini-panic attacks, but the lady was super helpful, and because no one else was looking in the bra area, WonderfulHubby was able to come and sit in the cozy waiting area just outside the changing rooms, and come in and calm me down when I needed him too. So we ended up with 3 bras that work great, so that is a relief! (We know things may change again after the next surgery, so no point in stocking up a ton.
Also, while I was there, the nice lady was chatting to me about bras, and gave me the following tips:
1- A 10 pound weight change can change your bra size (I was astounded!!).
2 - You shouldn't wear the same bra two days in a row, because that will stretch them out.
3 - You should get fitted every year, just 'cause your body can change a bit even if your weight doesn't. So maybe go get fitted right before your next mammogram, or for your birthday every year... Hmmm, It's an idead

Mini Update

So, I totally got the drains removed the same day as my last post. Thank goodness! So now my total Borg-ness is down to Zero!!
And, after waiting and hunching over for another week, I had permission to stand up straight! And I figured out why she didn't want me to stand up straight: I simply couldn't. She had tightened me up pretty well, so there wasn't any give. So the first day I was about 5 degrees off straight up (and down). The next few days I looked like I was standing up straight, but didn't feel like it. Now I feel like I really can, and it's so nice. It took my back a while to stop aching from hunching over all the time, and I still wear my belt/corset thing to help my tummy from feeling like it's falling apart, though I can go without it for a few hours. And my stamina is coming back, ever so slowly. I can wash dishes all in one go, and vacuum the living room. Though not one right after another, but maybe next week. Heck, really when did I ever do that with any regularity? ;) Starting next week I can start to exercise, though I plan (hope???) to find time to use the treadmill this week. Oh, and my tummy is flat. Really, this a great result of having Breast Cancer. I had a bit of a post-baby pudge started after baby #3, and then had baby #4, and then it started growing after chemo was over, so if you didn't know my situation, you might be tempted to ask if I was pregnant. So now my clothes fit better, and I am ready to get rid of all of my peasant top shirts that I bought to hide my uneven chest and pudgy tummy. I probably just keep a favorite or two, and let the rest go.
As for future stuff: I'll meet with Dr. Chen again in May to schedule my next, LAST, surgery, which should be much quicker and easier to recover from. Woohoo!
And that's all I have to say about that.  :)

Quick update

Surgery went really well. (Or so the doctor says, and I will take her word for it.) On my end, the first day was heck, the second day started out rough, but got better, and by Friday I was feeling pretty ok, all things considered. So when Dr. Chen came to check on me Friday afternoon, she asked if I felt like I needed to stay another night like we had planned. I decided I did not, and was happy to go home with WonderfulHubby after dinner that day (ok, you got me, I generally like hospital food). He relieved my Sweetmom from watching the kids when we got home, which was especially good because she had a regular volunteer assignment lined up on Saturday mornings.
So, the doctors orders were to not stand up straight, or lay flat for two weeks. This is killer on the back, but it prevents the scar from stretching out. Right now I am a week and a half out, and waiting, waiting, waiting. We rented a walker, as per her instructions, so I can get around without completely killing my back. I also have three drains, one for the chest, and two below the tummy incision. The incision on my tummy is from hip to hip, and looks really ugly right now, but in a healthy way, so it's not infected or anything. I also wear a stretchy velcro'd corset thing to hold the incision in place, and help me not feel like my insides are going to fall out. And I have go to tell you, when I have taken it off to shower, that is what it has felt like! Very unnerving.
Been home for almost a week now (a few hours short), and am going in to see the Doctor today. Really hoping she takes the drains out, they seem to be collecting little enough that I think she will. In general, I am feeling pretty well. I am down to only taking one Lortab right before bed, and as long as I take it easy enough during the day, I don't need a nap. If I do nap, it takes me forever to fall asleep.
Anyways, time to leave for the doctor. Thanks for all your support!

Reconstruction!

Tomorrow is the big day. Tomorrow I travel down to the ginormous hospital in Salt Lake City for my reconstruction. Over the last few months I thought and thought about the pros and cons of having Dr. Massey perform my reconstruction. I thought about how fun it would be to travel to the eastern states. But then I thought about the headache that would come with getting the insurance to work with her, worrying about travel plans and where to stay, and whether we would have to pay for WonderfulHubby's airline ticket out of pocket. I worried about who would be able to take care of my kids for so long, and I worried about how my kiddos would handle me being gone for so long (I would have to spend two weeks there to recover before flying home). And I talked to the ladies in my support group, and there are two doctors in Salt Lake who perform the surgery, and both are covered by my insurance!

So I met with the woman doctor, Dr. June Chen back in November, and really liked her, and got the date all set. That was about the time I had my last herceptin (easy chemo) treatment, and my first "regularly scheduled" mammogram. Mammogram came back clear as can be, so no worries there. Anyways, like I said in a previous post, I decided I definitely wanted to go with the reconstruction where they use your tummy fat to rebuild it (called a DIEP). There are other options, but this seemed like the best for me, especially because my tummy is my "trouble area" as far as weight goes.

Now the last week or so, I have been a bundle of nerves. I think I was less nervous when I was going in for my mastectomy, but who's to know for sure. My memory is definitely not that clear... I think what I am worried the most about is the recovery. I have been told that the tummy tuck part of the surgery takes longer to heal than the chest. So, WonderfulHubby is taking two or three weeks off work, and then my mom is coming to stay for a week, and perhaps as that is coming to an end we will see if I need any more help. Today we have kept busy doing laundry, and making sure all the shopping and errands are done. Hopefully WonderfulHubby will get a good night's rest, because we will have to wake up around 4:15 to make sure we get to the hospital for the sign-in time they gave us, 5:30! Me, well, though I prefer getting a good night's sleep, it doesn't matter as much, because I'll be sleeping most of the day because the procedure is so long.

Oh! And Dr. Chen will be removing my porta-cath as well! Woohoo! So that's one less surgery to worry about.

Also, I went in 2 weeks ago to Dr. Okawa to get my tissue expander inflated so that my scar would be smaller. We overfilled, though didn't realize until a few hours later and she had already left the office. It hurt so bad! And the percocet barely took the edge off, and made me feel sick and dizzy! Do I had a miserable couple of days before I could go back in and have her take out the excess. Dr. Okawa was sick the next day, or she would have done it then.

So that is all for now. Keep me and my family in your prayers. I'm going to have a 3 day stay afterwards, and that will be hard on my little kiddos. Thank you!!

New Boobie Doctor

I met with Dr. Marga Massey down in Salt Lake earlier this month (June), about a week after radiation was done. She is this very wonderful doctor who spends her whole time doing breast cancer reconstructions. She has three hospitals she operates out of, and has five offices around the US she regularly visits so that women from all over the US can have an easier time getting in to meet with her and get a consult. She is really neat, and specializes in doing reconstructions with the patient's own fatty tissue. I've done a LOT of research and asking around, and have decided that this is what I want. So I had a very nice meeting with her. She said she was kind of at a loss on what to do with me because I was so informed on the different options. But I am one of the lucky ones who had chemo first, and not surgery first, so I had plenty of time to decide, and wasn't walking into this meeting a nervous wreck.

I'll post again when I get closer to the surgery date. So I think I may be done posting (or feeling guilty about not posting, heh heh), for a while. Love you all. Thank you for all your prayers and support!

Test Results

So I went in for my Herceptin treatment on the last day of radiation. I asked Dr.Hansen how we would know it was all effective. He had forgotten to have me go in and get an x-ray and blood work done after the final "real" chemo treatment, so he wrote me a prescription (order?) to get that done. I went in a couple days later and quickly got that taken care of.

Dr. Hansen's office called about a week later with the results. The office lady left me a message on my cell phone.

Wanna hear the results?

Are you sure?

Okay...

No More Cancer!!!! I am officially in remission!!!

Woohoo!!!

That's one message I don't want to erase, ever.  :)

So, as it stands, I keep doing the Herceptin treatments every three weeks until October (so that I've had it for one full year). Then come November or December I can get the first reconstruction sugery done (there are usually three reconstruction surgeries).  I'll have mammograms on the remaining "real" breast every year, probably for the rest of my life. And life will move on...

Time to catch up!

First things first, I have hair again! It is long enough to shampoo, and to feel the wind blowing through it! I can't tell you how happy I was on the day those things happened! It is not long enough to comb yet, but no worries, it has gotten pretty thick since it first came in. It does throw me off a little though when cleaning up...

How? Well, if I find ponytail holders, my habit is to put them in my on hair until I get to the bathroom to put them away (You can imagine just how wacky my hair looked when I was a teenager picking up 5 or 6 big scrunchies). So I pick up a ponytail holder, subconciously know I have hair again, and reach to put it in my hair. I usually stop about halfway through the motion with a look of chagrin. My hair may be one-half to one full inch long, but that is definitely not long enough for a ponytail holder. :)

Nextly, radiation has started, and finished. I was happy when I met with my Radiology Oncologist and she said I would only have 5 weeks of radiation. Whew! Super glad we got rid of that extra week.

Now, what with me being sick, I didn't go back into the surgeon to get the tissue expander expanded anymore. I was satisfied with it, and didn't want any additional pain I could avoid. So I went in to the visit with Dr. Ingersol's office. She is the radiation oncologist. I met with her, and she noticed I had a skin infection starting around the scar on my left lump(which I had kind of noticed but not thought was anything like an infection until maybe the day I went in to see her). Oh, and it hardly seems like a breast anymore. Seeing as how there's a sack of water making it big, there is no nipple, and really, no skin sensation there anymore. I can feel pressure, but that's about it. Anyways, so Dr. Ingersol marked up the lump to make a border around the infection to see if the antibiotics she was prescribing were working. Then she left me with Aaron, one of the radiologists. Now, there are three radiologists in this office, plus the nurse who works with Dr. Ingersol. The nurse's name is Karen. Then we have the radiologists: Aaron, Darren, and Karen. Crazy, huh?!

Anyways Aaron took me to the simulation room, and explained the process, showed me around, and then got to business (all the while keeping up a steady stream of jokes). This room is just like the radiation room, just the machine only takes x-rays, and doesn't shoot cancer-killing radiation. So, you walk into the room, and there is a table laying in front of a large machine that has a short, fat arm sticking out above the table. They put a special board on the table that has a slight incline. It has a resting place for my head, and stirrups for my arms to go into so they meet above my head, with a vertical bar to hold onto. So I lay on the table, and put my arms up, and because there are lymph nodes in the neck/shoulder area, I have to lay looking slightly to the right so they zap just that area, and not my ear too. So he shot a bunch of x-rays, and made marks. When he was all done, he got out a bottle of ink and a needle, and made me 5 "dot" tattoos. I am going to pretend they are interesting, like microscopic sailing ships. Or maybe, I will get another dot close to the first ones, and add a bit smile for smiley faces. The tattoos are to use to line up with the laser-lights that shine out of the ceiling and walls of the radiation rooms.

Then he took me to get a quick scan done somewhere else in the building, and I was done for the day. I came back a week later to start radiation.

Now, I had 6 areas they started out zapping. Neck/shoulder area from the front, then the back. Then the affected breast from upper/right twice, and the same general area from my left, more shooting straight at my side. Now this arm that is shooting radiation at me has a glass plate with a "+" centered on it. Behind the glass, there are pins that are the approximate size of the fat teeth of a comb, but not tapered. These pins rest right against each other, and there are two sets that meet in the middle. They can move the pins independently and use them to form the different specific shapes that they need to radiate, so I don’t have any overlap in the radiation fields that are right next to each other, and so they don’t zap what they don’t need to. When they would zap my breast from the upper right I could watch the pins move during the zapping, so at least those two zaps got more or a sweeping pattern than a blanket open zap.

Each zap took about 20 seconds. I would come in with my hospital robe and jeans on. The radiologist (whoever it was that day, they all took turns), would hold up a pillowcase (or a piece of fabric about that big) in front of my chest. I would take off my robe, and hold onto the pillowcase while I got onto the table. Once I was on the table with my arms and hands in place, they would fold the pillowcase so it covered the un-affected breast. So I’m all ready, and they move the table with a control to get it pretty close to where I needed to be, and then would nudge the frame I was laying on to get me all lined up with the laser-lights coming out of the walls. They would get me all lined up, and the radiation machine “face” all lined up. They would then turn on a light and mark with a marker the lower end of the neck/shoulder field. I think I was only drawn on more often in high school when I would write all my homework assignments on my hand!

So, they would zap the neck/shoulder top, come in and raise the table and move the radiation machine face around to beneath the table to zap from below. Then come back in and move the table and radiation machine face for the breast zaps. Zap, zap from above right, come in to move the machine face again, and zap, zap the left side. It only took ten minutes, tops. It did take longer on the days my allergies where acting up and I had to cough in the middle of the zapping. I had to fight the reflex to cover my mouth when I coughed. When I did move to cough, they had to come in and re-align me. But they were all very nice about coming in to readjust me when I moved.

So that’s about it for the radiation room. They had a waiting room back in their hallway of the hospital. The waiting room had a restroom and two changing rooms right off of it. They had a tv, and a big puzzle set up, in case you ever had to wait very long. It was one of those harder puzzles. The first day I looked at it, I could find any pieces to match up, and I was so frustrated I wanted to box it all up and start with a different one. After that I readjusted my expectations to be happy if I even placed one if I ever had to wait very long. That made it very much less frustrating.

I met with Dr. Ingersoll once a week. She would check on my progress, and how my skin was reacting. It developed into a pretty bad “sunburn” on the areas that really never saw the sun. I am ever so thankful that has healed up now to just funny looking tan lines. The last week of radiation I started to realize how hard it was getting on my body. I didn’t do much during the day just keep an eye on the kids and play on the computer, so I didn’t notice. Then I took my girls for a walk around our little block. I hadn’t even made it the corner only three houses away, when I felt my legs and arms just telling me how exhausted they were. After that I decided to stop feeling guilty about my computer time until I was done with radiation, and really my body told me it was okay to do more.
And that’s radiation.

Visit from Wonderful Mother-in-law

So, WonderfulHubby went back to work, and his mom came to stay. I had one day in between when I had the kids to myself. But the older kids had short day at school that day, so I wasn't left to wrestle the younglings all by myself.
So WonderfulMIL arrived Saturday afternoon. She and I stayed home from church on Sunday (and watched Twilight, hehehehehe). Monday and Tuesday, after the big kids went to school and we started to go through what she had brought to watch, read and crochet, I was starting to feel a little guilty about having her miss work to just come play with me. I mean, don't get me wrong, I really enjoyed having her visit, and all the brother-in-laws and their families coming by to say hello, too. But I didn't feel like I really needed her there and was "waisting" her vacation time. Then Tuesday night I woke up sick. Like hours sitting on the toilet waiting for the flood to end so I can go back to bed and get some sleep. And not just diarrhea, but nausea too. For me, it's usually just diarrhea, and I can eat whatever, so that was different (not that I usually get up in the middle of the night to eat, but actually wanting to drink some water would have been nice). Then the throwing up started. This crap was more intensive than most of my chemo-related sickness! WonderfulMIL got the older kids off to school and WonderfulHubby got himself off to work. At that point I was just trying to crawl back into bed so I could sleep it off. When it became obvious that wasn't going to happen, I called my family practice doctor and left a message to see what I should do. I waited a bit longer, then called the main clinic line and made an appointment with whoever in the clinic had an opening, which was luckily not too far off. WonderfulMIL loaded the little kids in the van, and we took them to our neighbor. Then she drove me to the hospital (the clinic is in the basement). There wasn't any close parking, so she dropped me off at a door, parked, and then came and met up with me. Luckily there was a bench there I could sit on. I had my bucket with me, just in case. We walked together as far as the next main entrance, where we stopped so I could get a wheelchair. I would have not made it without it, believe you me!
When we got to the clinic and were checking in, my doctor's nurse saw me and said she had just tried to call my house, and that my regular doctor, Dr. Gochnour, would squeeze me into his schedule if I just wanted to wait about 15 minutes longer than what my appointment was for the other doctor. I happily took that suggestion, and sat in a room with WonderfulMIL with the lights dimmed, occasionally dry heaving, and crying (I cry when I am tired).
side note: Now, I don't know if I have before sung the praises of this clinic. We started going there from a recommendation from a friend before I got pregnant with Oldest Boy. We have seen nurses come and go, and staff change duties, and the location change. I have never been to a place where I felt better taken care of. Dr. Gochnour has delivered all of my babies. If I had ever REALLY needed to get a hold of him, I knew which office worker I could call who would place me on hold for 10 minutes until he walked by so she could snag him to answer my concern (and in my defense I only did this 3 times in the last 10 years). They all quickly heard I had cancer after I kinda announced it when I went in to get the flu shot in the fall (I was asking whether that made me considered to have a compromised immune system, even though I hadn't started chemo yet). So whenever I came in, whether for me or the kids, they all asked how I was doing, and just made me feel, well, looked after. So if anyone in the Ogden area is looking for a doctors office, drop me a line, and I will give you their number. Now, not to say they are perfect, there are still times we have to wait, and Dr. Gochnour is usually booked out a couple of weeks, but really that's to be expected, and it's not anything worth complaining about.
end side note
One of the nurses, upon hearing me dry heave, came in and offered to get me a drink of water so at least I would have something to throw up. She brought it to me, and I don't think I threw up after that, and it was nice to have something to sip (see! nice people!). Dr. Gochnour came in, and we talked about what was going on, and he said he recommended me getting admitted to stay overnight in the hospital. It was that, or just go get a transfusion of IV fluids. So I got wheeled upstairs and admitted. We called WonderfulHubby to let him know what was going on, and he left work early. We called my mom, and she came and got the kids from the neighbor to spend the night at her house, stopping at my house to pack them overnight clothes and wait for the big kids to get home from school.
In my room, they came to draw blood to run tests on. The intern that was on call for my clinic had left instructions to do blood draws and start and IV through my veins, and not my porta-cath. He was concerned especially about doing the blood draws through it, not wanting to break it. After having the lymph nodes removed in my left arm, they can no longer do any poking or pricking on that side, so my right arm was the lucky pincushion. I was dehydrated, and they got a couple of good starts, to get the blood they needed for the tests, but then the vein would collapse when they tried to get the IV started. So I asked the nurses to ask the intern (resident?, I forget what they call them, he's almost a doctor), if we could do the IV through the porta-cath. He agreed, and gave them orders (because it has to be official, not because he was being bossy) to do it that way. I got some anti-nausea meds, and a shot in my tummy to keep my blood from clotting. (Apparently I got to skip that shot when I was in for my mastectomy because my blood was still thin from chemo.) I don't think I threw up anymore after that, though I did still have diarrhea for a couple of days. To illustrate how dehydrated I had become so quickly, they emptied a whole bag of IV fluids into me before I had to pee again. Very dehydrated.
Well, that is pretty much the whole story. WonderfulHubby brought lunch for him and his mom, which they kindly ate in the hallway because it smelled so horrible to me at that point. They went home late that night, I slept very little that night because I just knew as soon as I fell asleep the nurse or CNA would be in to check something and wake me up. I was feeling pretty much better by the next morning, and got released a bit before noon. My sweet mom kept the kids overnight the next night too. And maybe the next one too, I forget. Anyways, I got better, and had a lot of help, and was very thankful my WonderfulMIL was there that week.

Less Borg-Like, more Gumby-ish

Well, as I said before, the surgery went well. Recovery was moving along without too much pain, thanks to the Lortab. Then the second week, about Tuesday (March 15) or Wednesday, the Lortab stopped working. Very painful. But then On a whim the next Monday (March 22) I decided to take 3 Ibuprofen, and it worked!!!  So I used those for a few days until the pain dropped off again this weekend, and I only get random stabbings of pain, which I figure Ibuprofen wouldn't help much for anyways, and I just take them at night.

So on the 22nd I went in for a check-up with the plastic surgeon, hoping she would remove the drain. But it was still putting out too much fluid. She said to come back Friday and one of the nurses on her staff could remove it as long as it was only putting out below 30 ml a day. It got down that low, and so they took it out!!!!  I was forewarned, and took a good dose of over-the-counter pain pills so I could drive myself (because WonderfulHubby had to go to work that day), and the pain wasn't as bad as I expected. That afternoon I also went to Physical Therapy. I was warned that physical therapy might hurt a lot too as they stretched me, but I am a limber person. The Physical Therapist said her husband was limber like me and she called said he was like a gumby person. It was funny as she measured the movement of my good arm so she could see how far the affected arm would need to move. The good arm could relax into positions upto 30 degrees past "normal." Wahahaha, I like being a little abnormal. lol  So my affected arm is really close to normal range, but not quite there. So she gave me a list of stretches to do and a pulley thing to hook on a door so I can slowly get me affected arm up to where it needs to be.  Other than that, the physical therapist extended my "don't pick up the kids" rule for another 3 weeks. Grrr. I mean, I can pick them up with my good arm, so that'll get it done most of the time, but I can't carry Little Girl into bed when she falls asleep.

So Friday was a good, productive day. WonderfufHubby has Monday off, and then he's back to work. But his mom has come down to visit and help this coming week. I am excited, we get along very well. And she is the sewing queen! So I am hoping she can help me with a couple of projects I haven't gotten too.

Well, that's all for now. :)

Lumpy-ness

Well, I am back home and enjoying having my little sister around playing with my older kids and keeping me entertained.  My wonderful mom took the two little kids to stay at her house overnight a couple of nights, so that they would not overly love me for a couple of days. I have found that percocet makes me itchy, so Lortab it is. I have a drain, so I am slightly more Borg-like. And my arm is stiff and feels a little funny. But the doctors and the paperwork they gave me said to start using my arm for light-duty stuff right away. The paperwork mentioned doing my hair. I laughed about that. Then I brushed out my sister's hair.
I have to wait until the drains come out to really shower. grrrr. but that's okay, because I am still swollen, so I am not planning on going anywhere anytime soon. It's a good thing I have books and movies and tv shows and stuff like that. I am still really tired, but I can take a nap whenever I want to, as long as I can get comfy. Thank goodness for all of these wonderful people in my life!

Surgery Update

Surgery was yesterday morning. The first part of the surgery was the mastectomy. It took about 1.5 hours. The surgery went well. The surgeon was pleased with how things looked and went.

The second part of the surgery was inserting a tissue expander in preparation for reconstruction in the future. That took about 1 hour. Once again, the surgeon was pleased with how things went.

She has what is called a "drain." It is a tube that is connected to a little "bulb" that fluid collects in. She will have this for a few weeks to keep fluid from building up in the surgery site.

She spent about 1 hour in the recovery room and was then brought to her regular hospital room. She was hurting, but they were giving her medications. She ate a bowl of chicken soup and was nibbling on a few other dishes. I left at about 8:00 to be home with the kids.

Thanks for all the prayers and support.

Chemo Side-effects are reducing!

Just thought I would share the good news! I can now enjoy chocolate again, because the metallic taste in my mouth is greatly reduced. It's still there, but not enough to be very bothersome, and food is beginning to taste more and more normal. When that taste is strong, chocolate really tastes horrible. But, starting last night, ahhhhhh, it was wonderful again. ;)
Also, no more bloody nose! Just a few days ago, a bloody nose was a common and frequent occurance. Not huge ones, usually, but I definitely would have to carry a tissue. Now, not at all! Now I just need to get rid of this little sinus infection, and I'll be ready to go! Yippee!

Met with the Surgeon

So yesterday I met with my surgeon. Here's the plan. He will remove my affected breast, and all of the lymph nodes in the armpit next to it. Then the boob doctor will come in and place a tissue expander. This will stretch the skin to get it to the size I want. Then she will close up, leaving some drains in place for fluid build-up. The drains sound kinda creepy, huh?
At first I was very upset when my surgeon told me he would be removing all of my lymph nodes. My chemo doctor had said that the surgeon probably wouldn't have to remove all of them. But apparently there is no test or anything the can do while in surgery to see which exact lymph nodes need to be removed, and it is just safer to remove them all. So after I got all done being upset about that, and worried that I would develop Lymphedema, I talked to some friends, and found out that Lymphedema is not a guaranteed thing, nor does it stay for life if you happen to develop it. It kinda comes and goes like strep throat can. So that is a big sigh of relief, and I won't worry about it anymore.
I still need to decide what size I want to be when all is said and done. Do I go with my breastfeeding size (which is hard to find bras for in the regular stores, but will balance out my gut better), or regular me (which is a good size too, but not as big and fun, though I will fit into button-up shirts better). The insurance will cover "adjusting" the unaffected breast to match, so I can go either way I want. But I won't get that surgery until about 6 months after the radiation is completed, so that the skin will be all healed up and acting normally by the time we need to bother it with the surgery.
Fun stuff, huh?! It is really different/interesting/frusterating/fun trying to decide what size I want my boobies to be. I guess I'll look pretty normal no matter what. So, here's to deciding. (Cheers!)