Getting better

My frame of mind is improving. Oncologists throw me into a category of stage 4 without any additional variables of ME. They did not take into account the size of my tumor, the location, my age, my health, nor did they acknowledge my ability to be a positive thinking bad ass. I'm still going to be 90. 

Rough afternoon

OHSU was pretty intense and we were definitely not prepared. The oncologist was kind, but extremely blunt. Being an oncologist must be a really difficult negative job. They always have to give me statistics. I never want them. Stage 4, and the words incurable were thrown out at us as well as timelines. Both Brent and I seem to be back at the angry why me stage. It just sucks. They will put me into menopause to give me Arimidex and the onc yesterday said that should shrink and eliminate the tumor in my lung. She said she wouldn't recommend chemo right now, but that it may be something we need down the road. Basically since it has spread we know it travelled through the bloodstream, and in the sad oncologist world they sit around and wait for it to pop up somewhere else. I am trying to look at it from a much more positive standpoint, but it's hard.

 

I am healthy & young and try to stay positive, and none of those were thrown into her statistics. They always say cancer is hard to treat because it is so individualized, and then in the next breath they throw you into a statistic with everyone else. I have to admit I absolutely hate this, but I'm ready to do whatever I can to be one of those old people with a really good story to tell.

Positive thinking

My friend had the suggestion to focus on 10 good things about your day. It's quite the mood changer. Here's my list for today:

10 good things

1. I love the paint color on our house

2. The kids played beautifully today

3. I didn't know what day it was

4. I get to check out OHSU tomorrow

5. I mailed a gift

6. I have wonderful friends taking care of the kids tomorrow

7. Brent wasn't angry about his flat tire this AM

8. My family makes me feel loved

9. I decided all vacations should go ahead and be planned. we will just make them happen in some way or form

10. Waterskiing is in my near future

Robin Roberts

I finally got around to watching Robin Roberts journey that ESPN put together. She's just freaking awesome. I don't know that I would want Tom Cruise narrating for me, but all the rest is a tear jerking truth telling deal. I am so inspired by her. She puts her chin up and smiles and radiates beauty, sick or not. She's also willing to let the world watch her cry in pain and frustration and just be honest. I really relate to her, as the entire world does I'm sure. If you haven't watched the video, you should youtube it. It's just real.

I wouldn't watch it at work or anything, it'll make you cry. Brent sometimes sends me videos of servicemen and women coming home to their families with the (don't watch at work) hint attached. Those get me every time!

OHSU

Brent and I have been married 10 years! We're both a little surprised that we get to do this cancer thing twice, but we're wading our way through it. Another bump in the road...

The doctor that I was referred to at OHSU is Mr. Busy, so I was transferred to referred doc #2, Dr. Kemmer, within the same office. They put a rush on checking out all of my pathology stuff so I could meet with her this week. Otherwise we were going to have to postpone/change our trip to Montana, so I am thrilled they were willing to work with me. They needed a bunch of info obviously, to be able to check everything out. I was surprised at the number of "things" I've had done that I'd blocked out. They wanted the pathology info from 5 years ago and the more recent stuff, blood work, bone scans, CT scans, PET scans, chemo info, radiation doctor. Wow. My medical file must be ridiculously thick. I hear a lot of "you are really healthy except for this cancer," type statements. It's rather comical by now. Yea, my lungs are in great shape except for that big nasty black spot trying to take over my body. I don't quite know how to respond, do you say thank you for that kind of statement? Is it a compliment?

I'm still kind of hoping they'll check out the pathology and decide they have this fancy new process they'd like me to do instead of chemo. It won't make me sick, I won't lose my hair, I'll feel totally and completely normal while killing the cancer at the same time. Totally logically hopeful. :)

I will meet with Dr. Lee (normal oncologist) August 7th, and I'm guessing we'll compare notes to Dr. Kemmer (OHSU doc) and make a plan from there.

In the meantime, I am fully enjoying my summer, loving feeling good, hanging out with the little dudes, and feeling relaxed. We'll see what Thursday brings!

Answers!

Another doctor, a stand in, from Dr. Lee's office called to give me results. The tumor characteristics are pretty much the same as last time, which is good news. He said "looks very similar." The really good news is that it is still estrogen positive. This makes it easier to treat, just because there are way more drugs and "stuff" out there to fight it. I apparently am estrogen central. You want estrogen? I got it. If only I could bottle it and sell it. Turns out I am far more girly than I ever realized...

The other good news is that Dr. Lee is calling in a second opinion. I have a lot of respect for Dr. Lee and I feel like she takes good care of me, gives me her personal cell phone number, calls me on her free time, etc. I have wondered though if I should seek out a second opinion. She referred me to Dr. Chui at OHSU. He's a breast cancer specialist. I asked the stand in today why I was being referred, he said she just wants to be sure that she's making the right decisions for me. He also said they should call me by Friday. I love that she's seeking out someone else for me, and she's not too proud to ask for help.

I assume that I won't have to do another biopsy, they've got that data. I see no reason to, but the medical world is pretty good at curve balls and change-ups...

I've been trying very hard to remain calm, and to stay positive and enjoy the moment. I think the universe is recognizing my efforts. I feel really good about today's news. They didn't call to tell me they made a giant mistake and there wasn't any cancer, but I feel like I have the next best thing.

Ugh...

I pestered the doctor... again. Apparently she is on a 2 week vacation. Good for her, she has to have some sanity time too, but ugh. Another doctor from her office is supposed to be able to call me with the pathology results, which won't really mean much. My understanding is it just determines the type of chemo. After we have "official results" we meet with the doctor... when she's home from vacation... in 2 weeks. Ugh. I guess it just means more time to feel healthy and play in the summer sun. Always a silver lining.

Waiting for doctors

I'm still waiting for results, waiting to make an appointment to discuss a plan, waiting for a port to be put in, and waiting for chemo to get going. There is of course a part of me that wishes the doctor would call and tell me she made a mistake, it's not cancer after all. Wouldn't that be cool!? :)

I'm trying to find a way to not constantly think about it, but I definitely have not perfected that yet. The X-ray Friday showed no change, which was good. The air was still there, but hadn't increased meaning my lung isn't leaking. Whee! 

I visited with a friend on Saturday that felt a bit more like a counseling session, in a good way. I feel a lot of guilt over making others unhappy with all of this. I know it sounds rather absurd, but that's how I operate. I haven't quite perfected that either... Life is always a work in progress! 

I talk to my Grandma Madge a lot, she passed away in 2006, but I always feel like she's taking care of me. When I went in for the biopsy my main nurse was Christina (my mom's name is Christine in case you don't know her awesome self). I immediately felt like Grandma was there. The first X-ray I had was given by a different Christina. As I was laying and waiting for X-ray #2, a woman walked by and I heard the staff say "Hi teena!" (Teena is what my mom's family calls her), so I was feeling my family all around me. Just before we left a woman was being helped to her wheelchair and her nurse said "ok, see you later Madge!" (Again, Grandma's name). My mouth fell open & Brent had a big smile on his face. My grandma is definitely taking care of me. 

If I ever have any more medical information, I'll keep you posted. 

Warning: not for those who don't like medical stuff: biopsy news

I have put this picture everywhere because it amuses me how ugly this gown is. You can see the socks to prepare my feet for the post-op pedicure... Oh wait... Maybe that doesn't happen...

Holy crap that was horrible. I'm home now, some ache, but haven't needed Tylenol or anything, just taking it easy. There was an air pocket above my lung that had them x-raying things to be sure but was ok. Basically it means my lung leaked a little air, but stopped because with each x-ray it was unchanged. They want another x-ray tomorrow morning to make sure my body will absorb the oxygen. I'm hoping it has because if it hasn't, we needle it up again to drain it. Yeah, I never want to do that again.

Ok, here goes, I'm giving you the gory details, so if you don't want to read, I'm not offended. I was really emotional & freaked out this morning. Literally the nurse walked in and tears started streaming down my face and I couldn't stop. I stopped once the procedure was finally done. Dehydration I'm sure will set in from that loss of water. They tried some anti-anxiety drugs to calm me, but there's no way that worked. I was a train wreck.

They decided they had to go in from the left side, in through the front would mean a popped implant, through the back is probably the biggest needle known to man, so left side it was. They do the procedure in CT so they can use the imaging to guide the needle and make sure it's in the right place. They took some images, being very careful because the actual site is about 1cm away from my heart. Rad. They numbed me first which really sucked. Obviously I needed some numbing, but I can't even explain to you what that feels like. It's kind of like a huge side ache, but your brain knows its because of a needle going behind your ribs. More tears. Not from pain, just from fear.

Then the needle goes in. A man named Mark let me hold his hand, which was wonderful, while the dr went for it. I would have to take a deep breath as the needle would go in deeper. They would slide me into the CT tube to take a scan to make sure the needle was in the right place, then go for more. Luckily they were good and got it in the exact right place first try. They then took samples, this part didn't hurt, but I could still feel the needle location in my chest which was just more than my emotions could handle. The needle was in for about 5 minutes, then we were done. The needle coming out caused some surprise, but I was glad it was out. I have no idea how big it was, but big enough to go through my side, behind my ribs, and into my lung.

There was minimal bleeding which was good, just some air leakage that will hopefully be taken care of soon. On the way out the doc told me to be aware of any shortness of breath, I have none. I asked him if I could have wine, and he said "oh yeah, just not so much that you can't tell there's a shortness of breath." Perfect.

So it wasn't quite the Pulp Fiction Uma Thurman moment, but I'm sure it was close. :)

Yeeeeeee!!!!

Dude, they are putting a needle through my freaking chest tomorrow! Are you kidding me!? My lung, shouldn't it not have holes, will it pop like a balloon!? How do you administer enough sedatives to make this ok, without knocking me out? Everybody's asleep at my house, and my head is full of rational thoughts like these. I'm tempted to look it up online, but so far researching things online has been horrible. Nobody online wants to tell their happy story, just the really sucky ones about the time a needle popped their chest like a balloon.

My grandma gets a shot in her eyeball once a month. EYEBALL. Eyes have to be open for that one. I can handle one lung shot if Grandma can do that. I think...

Delay #1

Just an FYI... The biopsy is rescheduled for Thursday. Apparently they accidentally double booked me, and I take low priority, so I got bumped. I wonder if they would have bumped Angelina Jolie!? Jerks. Who knows when we'll have results, or when anything is happening. We're re-learning to go with the flow. We'll keep you posted!

Chemo thoughts

Thought I'd give you a visual so you have proof that while I'm doing well. 

We don't know what kind of chemo I will have yet, but more than likely it will be the same route as last time. Four of one (the worst one) and four of a different breed. Once every other week. We will know for sure after we get results back from the biopsy (maybe this Friday?) I keep guessing on when things will get underway, but I'm sure it won't work out that way. It never does in Doctor/Insurance Land. If the biopsy results prove that it's a different kind of tumor, then I don't have a clue what sort of chemo I'm headed for.

We have been trying to talk about what worked last time, and what didn't work. Brent is accepting all kid help that we can get. Luckily our kids are pretty freaking awesome, so we have lots of people that are willing to hang out with them. :) I am trying to be as healthy as possible as we head into chemo. I feel like I can handle that aspect of things better than last time. I have begun some research into nutrition and exercise pre, during, and post chemo. I don't know that I'll ever be the hard core dieter, I'm really good at eating. However, if there are things I can do to feel like I'm a bit more in control, then I'll definitely go for that. We had some wonderful people help us with food and stuff last time. It was amazingly helpful, but we might try to take care of it on our own this time around... depends on how much of this nutrition stuff I buy into, if I stick with it, or if it's just my current interest...

We did figure out the drug thing a bit last time, as far as nausea is concerned. Emend was the winner that finally stopped the puking, but was crazy expensive. It will be interesting to see what newer drugs they have, or if insurance finally covers the one that works. We know my hair will fall out, and wigs make my head itch, so maybe we'll re-stock on hats or try some scarves. I have no idea how those women tie those things and make them look cool. I'll have to youtube it.  I know I'll have some days of depression and just blegh. I'm going to try really hard to have some form of physical activity on those days especially.  I think that will make a huge difference. Rain or no, putting myself in motion has always made me feel better. I will try to work as much as possible, which I know seems somewhat ridiculous, but I need a reason to get up and get going, I need to have a reason to take a shower, tie the scarf on my head and go see my school family. :) I don't know exactly how that will all work, we'll figure it out. I have a few sick days saved up... My dad definitely will not be subbing for me this time. His license is expired, and I wouldn't ask him to do it again anyway. I'm sure he'll never tell me how totally crappy that was. 

I'm still pissed I won't have any eyebrows, but that's a ways off. I'll deal with that later. 

Ok... here we go... again!

The big bad cancer is back, BUT I still have a good prognosis. There is a tiny (11mm) spot on my lungs that was discovered in a PET scan after seeing some suspicious business on a CT scan. They (doctor folk) had to determine if we could biopsy the sucker, because it's so small. Turns out they can, which is good news. Being able to biopsy it will give them more information, and determine if it is breast cancer and the same kind, or if it has morphed, or is lung cancer. Chances are pretty high that it's the same stuff, but being able to confirm that will make sure the drug cocktail is appropriate.

The biopsy is scheduled for Tuesday at 8AM. It's a needle through my chest, so I'm really very excited about the process. Who wouldn't want a needle jammed in their chest? The best part is they won't knock me out for the procedure, so I'll be able to truly enjoy it. I'm hoping the results will be back by Friday, but who knows in medical land.

I am looking at chemo for sure, (what a waste of money to dye my hair). I am also looking at a fairly simple procedure to remove my ovaries to put me into menopause, my guess is after chemo, but who knows. The point of that is partly preventative, and partly because the post-menopause drugs are better than pre-menopause drugs. They probably would not open me up to remove the tumor because if chemo will kill it, then they don't need to do such an invasive procedure. Plus, cancer cells really like areas that are in need of healing, so they would be more likely to park in there. I must admit, the idea of cutting it out sounds pretty appealing (sincerely), just because it would be OUT, but opening my chest doesn't sound fun.

Brent and I (and family) spent last weekend pretty stressed and freaked out. Once I had a diagnosis from my oncologist I actually felt much better. I foolishly went online and was googling things... definitely don't do that. I told her I didn't want to know my statistics, my odds of survival, just no. She said "ok, but you're still looking pretty good." That's all I needed to hear. I feel pretty confident and am anxious to get going and kill this stuff. 11mm is pretty small, which is a huge positive. My oncologist drives me nuts sometimes because she's so overly cautious. Turns out we're going to kick this tumor's butt because she was "overly" vigilant. I told Brent I have always thought I would live to be 90 years old, so I may make a sign for my file for the oncologist to have just in case she needs a reminder. Whatever gets me to 90, I'm in.

I debated whether or not I should write on the blog again. I made it 4 years 364 days since my previous diagnosis... I told Brent it's like finishing 8th in the cross country race when the top 7 go to state. Sooooo close. Oh well, 5 years of cancer free this time around apparently wasn't meant to be. I'll get there in another 5 years. I decided to write on here to keep people informed if they're curious, (I'm not offended if they're not), as well as give me a chance to vent. Writing about it seems to help my sanity, so I'll go with that.

We had a great weekend with family, and are headed home to the reality of doctors and scary stuff tomorrow. I am VERY optimistic and feel pretty ready to go. I'm not excited, but we can do this. 

Thanks for supporting us and reminding us how loved we are.