Tuesday, December 15, 2015

So, about this rollercoaster I'm on, I'd like a break now and then please...

Logging for a few days.
So. PET scan was fine on Thursday.
Work was fine most on Friday.
I was up most of the night Friday/Saturday.
I swallowed one pill and began coughing/vomiting and couldn't stop all day. Drank tea. Took allergy medicine... meh.
After going thru that, I wasn't thrilled with Saturday. Received a new anti-nausea med I take every 6 hours now. Sunday morning at 1:30 am I started coughing up blood along with mucus. Very disconcerting. This hasn't really ended yet... yuck.
Went to the dr.
Got two bags of fluid.
They didn't know what to do with me.
I had terrible sleep. Couldn't stop panic breathing where everytime I laid down I'd go into this breathing issue. Still an issue during the daytime.
Called to beg to see my oncologist Monday since I had a sub but she's been on holiday so she actually couldn't squeeze me in since she wants quality conversation time about the PET scan. So tomorrow I go.

PET SCAN results... 30 minute wait while my oncologist reviewed results, could have been good or bad, or both. Yep, both. Received "Mixed Results".

The one good: the tumor on my adrenal gland that was discovered in July shrunk a load, she was happy.

The other things, not so happy.
We did decide to stay the course.
I'll try my best to share what's the worrisome stuff:

1. Might have pneumonia, will get an antibiotic, likely liquid, tomorrow.
2. Mediastintum where I've been radiated/have tumor/been fighting/been cut up/operated there, etc.... is growing, more active. Plus found a new tumor area near the mass.
3. Abdomen hasn't been brought up before... could be cancer in there in the lower right quadrant, hmm.
4. Could also be peritoneal disease which is not something new for cervical cancer patients...
5. I have what's called a "Mixed Response" overall to the Nivolumab.

She also mentioned that she just got back from a conference where they discussed these checkpoint inhibitors, like Nivolumab, and how they're just not as straightforward as we'd like... and to stay the course and be patient. Guess I can do this.
She also mentioned that there sometimes are "pseudo progressors" which also she said might signal that we need to give more time.

Well, plugging away, going to be a little quiet and introspective now... Staying positive as I can. Resting where I find time. Working to get better sleep, here's hoping.
Wishing everyone well,
Thanks for journeying with me.

2 more months I'm going to stay this course, shall see. Every other week Nivolumab I believe, shall see!...

Saturday, December 5, 2015

Waking up happy can be a good thing

Birthday girl with her cupcake sweater- couldn't get the cupcake
earrines in the shot, sigh... Hi to my great brother-in-law as well...
So, it has been almost two months since I began my immunotherapy, tumultous months with the stinking feeding tube added in.
Last week my friend, thanks Catherine!, found me the powdered version of pocari sweat, happy day, saves money, reduces plastic bottles, thrilled... I'm still taking in Gatorade as well... I'm so happy to be avoiding dehydration for two weeks now, it is a relief. NO bags of fluid going into my veins, hooray!! If I could say the same for the constipation and coughing I'd be thrilled but I'm working on those.
I was able to go to work all this past week which I know isn't a big deal, but for me... it was. I so enjoy having enough stamina... and also am resting at the end of each day a huge amount.
It was fun to see family this week for my sister's birthday (Happy Birthday Rachel!!!) and was weird at the same time to not see my parents after consistently during the week after having them help me so often during past weeks. Grateful for their support.

I'm thrilled it is December but also overwhelmed since my kiddo has a big birthday next weekend... he's such a big boy and growing so fast. So grateful to be here for it...

Today was a good day. Sure I still needed a mid-day rest. Sure I still am exhausted. I did get Nivolumab this morning with my friend Catherine. We had a good time chatting... it was the first time in a while I could actually have a sustained conversation, such a relief to be able to communicate! I also got to find some medicine that my naturopathic dr. suggested for the cough and stamina as well.

When I woke up this morning I had the realization that I now can sleep on my back again. I've been unable to do this for months- since the tumor in my back created such pressure I was in pain even lying down that way. I am taking Advil on a regular basis as my gastro-enterologist recommended, might be that reason... BUT Could this mean that the tumor is shrinking? I should hope so. Nivolumab, do your best please. I'm trying to pave the way!
I'm trying to eat. I can take little baby/bird bites and water in between and can get 1/8 of what I used to into my body- leads to a good takeaway container but still I'm not "eating" like I'd dream of... shall see. I do now weigh in at 122 pounds... super exciting, over 120 again is a start towards healthy!!

I'm working to take quiet time, meditation time, restful moments. Sometimes that's hard because all I want to do is zone out and watch a tv show, but I'm trying.

Love my mom...
I found out that my oncologist wants to do a PET scan, sigh. I was really hoping for a CT but ok. I'm scheduled for this Thursday to get one done. PET scans suck to be honest... fasting, isolation, needles, but I'll get thru yet another one- 2nd one here in Oregon, 5th one overall I've had...
The following Tuesday I'll see my oncologist and go over the results of the test. Here's hoping for good ones. I won't go alone (my mom will come, she is very good at hearing EVERYTHING said). Never again will I go alone to an appointment with PET scan results. Learned my lesson on that last August.

Well... going to rest again now. Read a few good books recently and am loving an audiobook I'm listening to... I was stuck in another one and not enjoying it- solution? Take a break.

Wishing everyone a wonderful holiday season. Hanukah snuck up on us, can't believe it begins tomorrow night. Kiddo is thrilled of course. I'm just struggling to wrap presents for family in other states and think out mailing them, etc. It was fun to sort out what I bought for the holidays since I hadn't thought much about it since July. I do plan gifts way in advance...

Thanks for journeying with me!