Wondering

So Mayo never said this to me … [go figure – they didn’t tell me a few other things too] … but I have to wonder if my first tumor should’ve been classified as a grade 2 astrocytoma with anaplastic features. Parts of my tumor were heading for a grade 3 when they did the biopsy; Grade 3 and anaplastic are interchangeable, from my reading. The location of my tumor also fits the description.

http://rarediseases.org/rare-diseases/anaplastic-astrocytoma/

"Other common sites for anaplastic astrocytomas include the part of the brain that contains the thalamus and hypothalamus (diencephalon), the lower area of brain near the back of the neck that controls movement and balance (cerebellum), and the spinal cord. Tumors in the diencephalon region may cause headaches, fatigue, weakness of the arms and legs, vision problems, and hormonal imbalances."

We’re way beyond that now, but it still makes me wonder.

Fight like Hell.

One Organ Less

"'It's really strange to live, you know, just sort of maintaining your cancer,' she said. 'Without being able to have an operation, I have to just rely on [chemotherapy] until medicine hopefully catches up with cancer a little more.'" [Karen Walsh, via Huffington Post article]

She has a different cancer, but until there's something to successfully cure GBM, that's what I'm doing too.

We're likely having to extend my every 3 weeks infusion treatment an extra week this time because of surgery to remove my asshole gall bladder. We haven't heard back from my oncologist yet on that matter.

Even though it was laparoscopic surgery,  frick - I'm sore. My abdominal muscles  are so angry. I have to carefully roll on my side and use my arms to push myself up to sitting. I'm not supposed to lift over 10 lbs (full milk jug). In about 2 weeks, we'll have a post-op appointment with my surgeon.

I had way too much hospital time.

Fight like hell.

Damn Gall Bladder

For once, I ended up in the ER for something unrelated to my brain – not that I enjoy being there at all. The only – ONLY! – nice thing about being in the hospital is the adjustable beds. That’s it. And maybe the dilaudid.

Apparently my paternal grandmother had her gall bladder out, but I don’t know if that matters genetically. We thought at first that the gall bladder attack/stones may be related to the Avastin infusions, but my oncologist said that it would’ve taken longer to develop the stones than I’ve been on the Avastin. 

Just lucky, I guess. :-/ Also, my oncologist put the halt on them removing my gall bladder because of the bleeding risk from the Avastin. So… I still have all of my organs.

And now I’m further restricted, which pisses me off the most. I wasn’t able to eat anything even mildly spicy to begin, and now I can’t have anything that isn’t low fat. They’re just trying to take away all of my fun.

I think it’ll be a good week before I get this tape residue off and before the iv bruise goes away (Not real pleased I even had to get an IV, but it was the wrong gauge needle in my port for CT contrast].

N. is a saint for always being right by my side, through all of this bullshit. Apparently having aggressive, incurable brain cancer isn't enough.

Just another day in paradise …

Fight like Hell. 

[Yesterday vs. August 2015]

Go Go Gadget Eyes

Last week I had my usual Wednesday appointments and infusion. My oncologist was surprised that my eyes have improved yet again. Slowly but surely, my eyes are getting better. I don’t know what that means for me being able to drive again at some point.

I went to the young survivors group at Gilda’s club last week, as well. For the first time, I met another person that had astrocytoma glioblastoma. She was on Avastin too, and has been off of it for several years now without recurrence. This gives me hope that there’s an end in sight for me! 

The foster kitties are pretty humorous. Our little guy Bashful cannot keep his tongue in his mouth. What a Goof!  

Fight like Hell.

The Bittiest Kitties

Yesterday I had my two month MRI. My oncologist didn’t call when he received the images like he usually does, but I just figured that was because we see him Wednesday for my normal appointment/infusion day. ... That means this is a double chest stabbing week. :-/ 

He called this morning though – scan was good! I'm still in remission!!!

Our new fosters are pretty happy about it too. Heh.  :-)

Fight like Hell.

Book Nerd

This is what recovery from major brain surgery and fighting brain cancer looks like. I'm not letting the bitchcancer take away one of the things I love to do.

Fight like hell.

Remission

Wednesday was my oncologist appointment and infusion. Everything looked good with my labs so we were able to go ahead with the full dose. These lab results reinforced that we made the correct decision 2 weeks ago and that the protein in my urine was probably just a fluke [yay for fully functioning kidneys!].

My oncologist went over my MRI with us to show what he told us on the phone. The scan showed improvement from the previous scan two months ago. There is still an abnormal spot in the tumor cavity, but it hasn't grown and has remained stable. That is our goal, for my brain to remain stable and no regrowth. For the first time, my oncologist used the word remission. I am technically in remission!!! 

Also, We asked my oncologist if I had any travel restrictions, and thankfully I do not, as we will be travelling to Washington DC in May for Police Week. Ryan’s name will be added to the police memorial this year. n. has been asked to be the liaison for Amanda and their families.

Fight like Hell.

Crazy Cats and Bitty Kitties

Today was my monthly MRi. Good News! My oncologist called this afternoon to let us know that my scan from earlier today showed no signs of recurrence and that my brain is stable. Last Wednesday when I had my appointment with Dr. Robins I surprised him; my eyes had improved a lot, and I had been able to read 34 pages in a row without eye fatigue. I’ll have to tell him next Wednesday that I’ve been able to read even more since that night. I’m fighting like hell, and I’m slowly getting myself back.

We all know that I’m a bit of a crazy cat lady, so when I saw that my craft hero was going to be releasing Crazy Cat stamps, I freaked out. I had to have them! My friend Stephanie Hamen reached out to Tim and Mario to see if they could help me get my hands on the stamps (for which I would gladly pay). Tim and Mario are so nice and thoughtful! I had a package arrive today with the Crazy Cat stamps and a colorful note from Tim.

I opted for a late lunch and a nap when we got home from my MRI today, but tomorrow my hands will be covered in ink from playing with the crazy cat stamps. SQUEEP!

Fight like Hell.

P.s. I love our tiny foster kitties. They're a handful, but so cute and playful.

KITTENS!!!

Two weeks ago, we had to hold my infusion because of my lab results. My oncologist wasn't concerned about an additional week in between my infusions. They had to take me out of the study I was in because of that, but really that has no impact on my treatment. It actually gives us more flexibility if we need to tweak my dosages. It was nice to finally get some decent news today. My labs came back good, so I was able to get my infusions, as normal. The lidocaine actually worked today, which was a plus.

We got our new foster kittens on Tuesday with their mama. They came in to the shelter without names, so we got to name them. Mama’s name is Charlie, and her angels are Aladdin (Al), Jasmine, and Raja. They’re definitely in the flying kitten stage. They’re so dang cute, I can hardly handle it.

Fight like Hell.

Date-aversary

Eight years ago tonight I met the man that would later become my husband; what a crazy ride it has been! From cross country moves and back again to brain tumors, we've seen far more than our share.

This year has been absolute shit, but there's no one else I'd have by my side to go through it together.

Here's to a better 2016 all around!

Happy Holidays

I'm not feeling particularly festive this year, but I wish everyone happy holidays and good times with family and friends.

My eyes seem to be a little better on most days. It really depends on my naps and the light condition, but I've been able to do a little reading and actually finished a book recently. Score 1 for this book nerd!

I won't have another scan until January 25th. Until then we wait, and I still get infusions every 2 weeks. Some of my hair seems to be growing back in little fuzzies but I mostly just look ridiculous. This is me giving a shit...

Fight like hell.

F&%$ This Year

It's not all badass bitch tumor warrior woman and sarcasm over here. I'm pissed. I'm sad. And just when I thought we couldn’t possibly get kicked again this year . . .

I had an appointment with my oncologist and an infusion today. It turns out that the Avastin can cause a fatigue syndrome to set in after several months, So it looks like I’ll be taking naps for the foreseeable future, since the radiation fatigue is still hanging around.

My disability company had sent some forms for my doctor to fill out, so part of my appointment was spent answering super fun questions. In my oncologist’s opinion, I will not be returning to work anytime soon. He asked if I enjoy the work I do or if there were other things that I would like to do. [Cue: Panic]

  

At this point, my eyes may not heal any more. My oncologist thought that my eyes are probably as healed as they’re going to get, but he couldn’t say for sure. I’m still outlawed from driving, which is annoying. I have a stack of books next to our bed that I just want to read, but can’t manage more than 10 pages at a time. This is a hard pill for me to swallow. As if I wasn’t panicking enough about my future ability to return to work, my future ability to read makes me panic even more. . . . I’m still holding out hope that they’ll get better.

My oncologist is quite the character. The man is brilliant, but quite the character. He’ll walk out of the room during my appointment, without saying where he’s going, leave the door open, then walk back in a few moments, and continue talking right where he left off.

A final thought — This year can fuck off.

Fight like Hell.

Unexpected ER Trip

Well, today did not go as planned. We were supposed to be doing Shop with a Cop this morning, but instead ended up with an impromptu ER visit. Hurray.

In my last post, I mentioned a botched port accessing; since they weren’t able to use my port for the MRI last Monday, they ended up putting an IV in a vein in my left wrist joint. That in itself is not pleasant. I noticed yesterday morning that my left forearm was super sore. By yesterday evening, my arm was to the point where I couldn’t touch it without pain, and it was starting to have red splotches. I realized that from the point there they put in the IV and straight up my forearm was exactly where the pain and redness were.

N. reminded me that my oncologist had told us that because I’m receiving Avastin infusions that any sign of blood clots should be an ER visit. In the world of Avastin patients, I’m at a pretty low risk of having blood clots. But … that’s not something with which you mess around. N. called our neurosurgery contact, and they said we should go to the ER just to be safe. Unlike our last ER visit, it was deserted. We got into a room right away, and they sent me up to Ultrasound almost immediately. The ultrasound hurt like a &!@#%. It showed that I did not have a blood clot, though. They diagnosed me with superficial Thrombophlebitis and lymphangitis [inflammation of superficial veins and inflammation of the lymph nodes in that area] … from that lovely wrist joint IV I got stabbed with last Monday. I've lost count of how many time I've been stabbed for an IV since November 2008 [the start of the first go round], but I've never had anything more than a small bruise from an IV.

Needless to say, the American Center Imaging Department is on my shit list, and I will never attempt to get an MRI there again — Always, always at the main UW hospital. 

I’ll be on an antibiotic regimen for the next 10 days. Between that, elevation, and warm compresses, I should kick this. In the meantime … frick, my arm hurts.

On a happier note, it seems like my hair is starting to grow back a little. Also, our foster kittens were adopted together today. We have them for the week, but once we bring them to the adoption center on Friday, they'll go to their forever home. I'm happy that the little poofs will stay together, so that they won't be lonely. I imagine that we'll be getting a couple more kittens for our next foster round. :D    

         

Fight like Hell.

Burning the Bitch to the Ground!

After starting my week with botched port accessing, almost passing out, an IV in my wrist joint, and Ryan’s wake... it sure was nice to get a good news call from my oncologist Monday evening. just as we were pulling into the funeral home parking lot, Dr. Robins called and told us that my MRI looked exactly as he had hoped it would. My scan showed no signs of recurrence or progression, which means that the radiation and Avastin infusions are working! Dr. Robins said my brain is healthier than it was on my last scan in September.

I will continue to receive immunotherapy infusions every two weeks, indefinitely. My next MRI Is scheduled for January 25^th. My eyes continue to heal, but I’m still limited in my reading. We had busy days this week, so I missed a few naps, and my eyes certainly let me know they were not pleased. I think I made up for it this afternoon with an epic actual cat nap. 

Also, I finally got the lidocaine to work today, so when I got stabbed in the chest twice to get my port accessed, I only felt it a little the second time [Small victories].

Fight like Hell.

P.S. KITTENS!!!

Farewell, Friend

This evening, we started saying goodbye to a good friend and an even better man. I’m angry, and I’m heartbroken for my husband, his coworkers, and most importantly for Ryan’s wife.

[see story from August about the green beret sniper http://krjkickstumorass.blogspot.com/2015/08/home.html]

I was relaying this story to Ryan’s wife recently, and she told me how excited he had been that I had written about what he said on my blog. She said that he had talked about it for weeks. I am honored that this had meant as much to him as it means to me.

This afternoon When we went through the visitation line, I said my goodbyes and told Ryan that I would continue being a badass for the both of us. Later, I was able to tell this story to some of the members of Ryan’s green beret team. 

Godspeed, friend.

Fight like Hell.

Neuro Ophthalmologist

The good news is that my vision is fine. The bad news is that we just have to keep waiting for my brain to heal. As we found out yesterday at the ophthalmologist, nerves for your eyes are on the surface of your brain, so if your brain is angry your eyes will be angry. I passed all of the vision tests. My eyes are just having difficulty dilating appropriately in certain light conditions. I also have eye fatigue because my brain is still in the process of healing.

That really puts a cramp in this bookworm’s reading plans. The books call to me from my night stand, “Read Me. Read Me,” but by bedtime, I’m just too tired. The ophthalmologist had me buy a pair of those cheap reading glasses to help my eyes when I do need to read screens or paper. As I'm finding though, the laptop sits just a little too far away for the glasses to be of any help. I'll have to test them with a book when I'm not too tired. When I am able to go back to work, I may need to move my monitor closer if I still need to use the reading glasses. 

As for everything else, we continue to wait until the MRI on the 30th, and I continue to rest and heal.

Fight like Hell.      

Same Old, Same Old

Nothing much has changed here. My eyes are slowly returning to normal, but I’m still having problems focusing in low light, on screens/books, and if something is back-lit.  I have a neuro ophthalmology appointment on Wednesday… But my oncologist has outlawed me from driving, indefinitely.

Boo. Hiss.

I don’t have an infusion this week, so I’m looking forward to not getting stabbed in the chest for another week. Though after the 2 cavities I had filled on Monday, I’d rather have my port accessed any day. [I'm So glad I had chemo last time, since it likely did nothing but make me vomit and destroy my enamel].

The radiation fatigue is still holding on pretty strongly. I need at least one nap every day to function. The kitties have really been enjoying the naps, since they get to cuddle on the couch with me.

N. had to shave my head again tonight. I had this crazy Friar Tuck look going on. I’d say 80% of my head is bald or balding. My sister also had to wax the sides of my face today. I’m pretty furry anyway – Germany & the Czech Republic should really give the women in my family a hair removal stipend – and then the devil steroids made my hair grow like crazy. Fun.

Fight like hell.

Last Day & TV Interview

Yesterday was my last day of radiation. Thank goodness. Ta ta, Zofran; you’ve been a life saver. I'm very thankful that I did not spend 5.5 weeks with my head in the toilet this time.

We celebrated my last day the best way I know how — with kittens!!!

Check out my interview on the local news! [Skip ahead to 12:00 min].

http://www.channel3000.com/news/newscasts/36165558

Fight like hell.

Halloween & TV

This year I’ll be dressing up as KJ with hair for Halloween.

Just kidding —I really don’t care who sees my bald head, but I thought it’d be nice to get a wig just in case I wanted to have hair at times. Otherwise, I’ll continue to rock the G.I. Jane look. Many thanks to the Friends of the UW Hospital who fund raise to provide wigs to cancer patients free of charge!

I’ll be dressed in my usual pirate costume to hand out candy. Thanks to my big ass brain surgery, I have a legit eye patch to complete my costume this year. Heh.

Yesterday, N. and I were interviewed by Channel 3 about my battle, our love of the Badgers, and to help promote the “Beat Cancer” buttons that the Carbone Cancer Center is selling to raise money for research and patient services. We’ll be on Channel 3 at 4:00 pm and 6:00 pm. The interview will also be on the Channel 3000 website. I’ll post the link when it’s up.

tOMORROW IS MY LAST DAY OF RADIATION!      

Fight like hell.

Awesome Day

Yesterday was so awesome. I won tickets to the Matt Nathanson Studio M session at the 105.5 Triple M studio. We had to jet straight from my radiation appointment to make it to the show on time. After he played, we got to meet him. I took off my hat for the picture, and he was a little surprised at my bald head. I told him that I had brain cancer and that we had just come from my radiation appointment. He hugged me three times and told me that I was a badass. He asked if we would want to come to his show yesterday night. I replied, “I would love to!” I’ve always wanted to see him in concert.

And then I took a nap ... 

When we got to The Majestic for the show, we found that Matt had gotten us hooked up with VIP seats — So, so awesome. The concert was fantastic. I’m paying for it today with exhaustion, but it was worth it!

Fight like hell.