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.