A Doozy of a Year

So many things have happened this last month and there's no way to tie it all up nicely with a bow. So instead I'm going to jump all over the place with these updates. 

I don't have a bladder any longer. It's permanent. I'll have an urostomy bag on my abdomen to collect urine forever. It wasn't my only choice (there were two other equally shitty options) but it was the best choice for me. As weird as it has been to get used to, I have not regretted my decision at all. 

Surgery was hard. REALLY HARD. It was 7 or so hours with all these robotic arms and such. The hospital bed was angled down, with my head at the low part. I didn't have a full hysterectomy as was the plan at one point. A 5 night stay in the hospital before coming home, then a solid 3 weeks of serious pain before moving on to less-serious-pain. Could be a full year before I'm back to myself. I think I'm ready to hop on the treadmill for a walk any day now. I've missed physical activity so much. But not being able to even slightly twist or bend kind of makes that tough.

I was SO DONE with the hospital stay. I was actually pretty comfortable in the actual bed. Well, as comfortable as I could be given the fact that my insides had just been rearranged. But I was done with people. Most were very nice. But I didn't want to talk to anyone any more. I didn't want to say what my pain level was. I didn't want to pick what I wanted to order for lunch. I definitely didn't want to have my vitals checked or to tell one more person whether or not I had pooped. I get it - all of that had to be done so they knew I was ok. But I was way people-d out. 

Sleeping has been a challenge. I have a night drainage bag which is bigger than the day bag. But that means I'm attached to a tube all night long. It can get twisted. It relies on gravity to drain properly, so I can move in such a way that prohibits draining. I can accidentally pull on it while sleeping which pulls the adhesive on my stomach which feels just like ripping off a band aid. Add to it that everything on the inside is still tender too, so you can imagine how that feels. At first I could ONLY sleep on my back and propped up on many pillows (which is probably why I didn't mind the hospital bed.) I am starting to be able to handle short bouts on one side, but lately I've been moving to the recliner about halfway through the night. Sleep is the answer though. Every good day seems to follow a good night of sleep. 

I've gone into work a couple of times. That feels good because that feels normal. Working from home is still a lot easier for me because comfortable clothing feels best. I mean, it feels best all of the time but I guess I need it more these days. These next few weeks are the busiest of the year for me so I'm about to see how much I can truly handle. I'm not going to overdo it, don't worry. 

My hair is growing back! Finally! 

But, my head is still so cold. I wear a hat or the hood of my jacket practically at all times. Even when sleeping. The only time it's not cold is when I'm ridiculously hot because of stupid hot flashes. They've been going on for months. I thought it was chemo hot flashes which I read was a thing, but then they've continued on and I know chemo is out of my body at this point. Then I read that chemo can bring on temporary (or sometimes even permanent) menopause so I assume that's what it is. But it's so annoying. I take my jacket off and put it back on 700 times a day and night. And my hat. And socks. Misery.

I had to buy a belt to help hold the bag up. Imagine using Band Aids to stick a water balloon onto your stomach. Your stomach that is sore from a recent surgery, even. I was having to hold it up while walking around, so I finally forked over the $115 for a belt. It helps so much. 

I can drive. I can drink. I don't do both at the same time.

I'm not on any medications. Tylenol if I am feeling pain, but haven't needed that for a week or so. 

My appetite is normal. I got so used to just eating whatever I could stomach that I probably need to reign that in a bit. I have had so many Ensures though. They're pretty good! I only have a couple left and probably won't buy more, but I lived off of those these last couple of months. 

That's all I can think of at the moment for updates on how things have been going for me. I'm good! That's the best part. I can finally picture how things WILL be normal again and at times I really struggled seeing that.

This year has been a doozy. I'm so sick of saying that. I can't wait for a non doozy of a year.

Happy New Year!

It's Done

Today I am 45 days post chemo, 11 days post radical cystectomy, and I've been recovering at home for the last 6 days. I am less one organ and 12 lymph nodes since the last time I updated here, and I still have no hair. BUT! I have results.

My bladder and 12 lymph nodes were removed and sent to pathology to dissect and determine how well I responded to chemo. I was diagnosed either stage 2 or stage 3 bladder cancer. The difference being stage 3 is lymph node involvement and they couldn't be sure based on scans alone if the cancer had spread to lymph nodes. 

Pathology showed that some of the removed lymph nodes had scarring, indicating that they were in fact previously infected with cancer. Damn it. That means I was stage 3, and the cancer had escaped the bladder which was not what we wanted to hear. 

But, the good news is that there is no cancer remaining in any of the lymph nodes that were removed. Some had previously been affected, but chemo did its job and killed any cancer cells there. 

For my actual bladder: "No residual carcinoma status post neoadjuvant chemotherapy". I'll just take the words right from the report on this one. Can I give you a definition of each of those medical terms? No, not necessarily, but context clues (well, and a phone call with the surgeon that put things in layman's terms) tell me that THERE IS NO MORE CANCER REMAINING. "All margins negative for invasive tumor." This is best case scenario. 

I am thrilled with this news. I am. I did it, I got past this crap. I am as cancer free as I'll ever be and I hope to remain this way FOREVER. 

I have several drafts that I started writing and never finished over these last 45 days, but none of that matters anymore! I may feel the urge to come back and publish some of that so I'll have it documented, but for now this is all that matters. I'm cancer free, I'm past chemo, I'm past surgery and I'm starting to figure out my new normal. I should be able to celebrate a normal, beautiful Christmas with my beautiful girls and husband. I literally cannot ask for anything else right now. 

We did it.