One week down, 5 more to go.
I saw my Radiation Oncologist yesterday in the RONC offices. She stopped me and told me that she had heard from the therapists that I was some kind of rock star with radiation.
I agree. Rock Star I am.
It’s getting easier, although I still have the pleuritis (inflammation in my lung) and that still hurts. I’m dealing. My skin is also starting to turn pink. Not very, but it’s coming. I’m now wearing that Aquaflor goop more. Luckily I found a bunch of t-shirts that were still wearable but needed tossing out (stains) so I have plenty of shirts to ruin in the next month. This stuff is just sticky, oily and disgusting.
So I decided that I was going to give myself a little reward at the end of each week. Nothing huge, just something fun to do. Today I went to the…
Hello Kitty Cafe Truck!
It was making a stop at Victoria Gardens in Rancho Cucamonga today from 10 – 8pm. I met my good friend Amy, her husband Leigh and their daughter Ella and we had fun standing in line.
Maybe fun isn’t the right word.
Horrible is a word. We got into line at 9:15am and finally got to the truck at 11:30am. It was only 95 degrees but the humidity made it probably just over 100. I knew I would have issues standing in line so I brought my mom’s walker that has a seat. Thank GOD! Leigh was also super sweet to run out and get us icy drinks from nearby. It actually was fun in a “get to hang out with friends and do something silly” but it was so hot.
I think I got sunburned, which should make my radiation oncologist just slightly pissy. (Big No-No) Oh well.
Yes, Everything was really that expensive. It is only worth the money if it is something you don’t plan on doing more than once.
I got the Petit 4 Cakes (Almond, Raspberry, Lemon and Chocolate). Good but SWEET!
I also got a t-shirt. To wear after I can stop putting this oily, sticky crap on my skin:
The guy that gave me the shirt gave me some swag – a button and stickers!!!
It was a not-so-cool way to spend a Saturday morning. But I can say I was one of the crazy ones out there. Plus I got to spend time with this sweet girl, where I could finally have a conversation about Elena of Avalor and the new Doc McStuffins special on Disney Jr.
Have a great weekend!
PS: Even though it’s not a radiation day, I’m still wearing fun socks. I realized that I have no Hello Kitty (for shame!) so I wore my bright pink, yellow and black Batman socks. I also just realized that those socks with the black shoes I’m wearing make my feet look enormous! At least it detracts from the single breasted, muffin top action going on up higher!
Of course it had to happen.
As soon as you are comfortable with things, they change.
And you learn, once again, never to use a sharpie on your calendar.
The change of the day is …drum roll please… My surgery has been rescheduled from Dec 5th to Dec 10th.
(you know you made the drum roll sound – don’t lie!)
Apparently (and smartly), my surgeon didn’t want to operate on me on a day that my hematologist was out of town. So they are both in town on the 10th and that is when I will say “hasta la vista, baby” to my rack.
Today was an exhausting day. Although before I get rolling on this post, I must write a disclaimer that I’m currently under the influence of a Brandon’s Diner comfort food dinner with an Ativan chaser. This post could go anywhere.
As I said, today was an exhausting day. I started at Norris Cancer Center at 9am and ended at 3ish – give or take 1/2 hour for lunch. I had the following:
1. Chest Xray – this was no big deal. Although I forgot to wear a non-wired bra and chose the one with the bling on the front instead. The xray guy asked me if I had a bra on and I just automatically did the “unhook and slide out the sleeve” maneuver. He was like “oh, I guess not”. Did the xray and then he high tailed it out of there for a few minutes so that I could get re-dressed. That’s one funny thing I’ve noticed about the doctors. They’ll have their hands all over my breasts to find lumps and things but then act all shy and leave the room so I can put my shirt back on. Uhh, HELLO? I think modesty went out the window a few months ago.
Seriously, it’s almost instinct to take off my top now when someone asks me how I’m doing.
Show me your tumor, I’ll show you mine!
2. Labs – Had labs. I went in only expecting to have my normal blood work, transfusion blood work and some thyroid tests. Next thing I know they are setting up 7 FREAKING vials. And a pee cup. Now all of this new medicine has me cranky and acting like Sophia from the “Golden Girls” so I’m all “Who the
hell FUCK ordered that?” Well apparently it’s a pre-op thing I was never notified about. Luckily, Norris has bathrooms hidden about where it is a one person only bathroom with a lock on the door and lots of counter space. Except by the toilet. The only thing by the toilet was the toilet paper holder which was not perfectly flat on top, just slightly rounded. So I started off fine, set up paper towels on the top of the TP holder, used the wipes provided, peed into the cup and then, because there was nowhere else, I had to put the pee cup on the paper towel on the slightly rounded TP holder while I finished my business.
Have you ever tried going to the bathroom with one eye on a cup of pee that is delicately balanced on a TP holder, metaphysically willing it to stay upright while pulling paper out of said holder while also issuing SOS prayers to God that you don’t have to spend the rest of the day soaked in your own urine?
Ugh. At least it wasn’t a stool sample.
3. Next up was the hematologist. Well, not really the hematologist, but her Nurse Practitioner, Kristin. Kristin is awesome. Hematologist is out this week so Kristin and I went over my labs. Nothing to write home about – my white cells still don’t exist, my platelets are low and my hemoglobin is low enough that I’m getting 2 units of blood this Friday. My birthday. How much does that suck? Anyway, we talked about some of the blood issues related to surgery and she was with me for just over an hour.
One thing about Norris, they spend as much time with you as they need. I’ve had appointments that lasted 15 minutes and some that lasted over 2 hours. That place is amazing!
4. Finally, fourth and goal, is my appointment with my surgeon. I had a TON of questions to ask and she answered all of them and more. I’ve been super anxious about the process of surgery and what happens when, and she just relieved my mind so much. I’m not exactly looking forward to it but I’m not freaking out. It looks like she might keep me for 48 hours in case I need more blood or platelets after surgery. She is putting a waterproof dressing over my incision/stitches so that I’m able to take a quick shower as soon as the next day (I just can’t get any kind of soap on the site). She thinks that I’ll be down and super fatigued for a week or two but I can start going on quick errands (not driving) or short walks as soon as I feel up to it. YAY! I need to stop reading the internet because there are some horror stories out there.
What I’m really excited about? The second Hobbit movie comes out on the 12th, so I might possibly be able to see it the following week! YAY!
There is also a little problem with my veins. Because I am having lymph nodes taken from my left arm, I can’t really use it for any kind of blood draws or IVs after surgery for a really long time. My right arm is the arm that makes nurses scream and cry because my veins are super small and sucky. The size IV that the anesthesiologist needs for surgery will not fit in my arm vein. So sometime prior to surgery, I have to have a small procedure to put a port in. This is a small circular thing that sits underneath the skin near your collarbone and has a small tube that is attached to an artery. After I get this placed, the nurse can use a special needle to access the port and I will get blood draws and transfusions through this from now on. Much more comfortable than having my arm accessed all the time. The plan is that during surgery, they will use the port to put me to sleep and then place a central line at my neck for more access points. When I’m discharged from the hospital, they will pull the central line out. It sounds worse than it is. From what I’ve been told. It could totally suck. I’ll let you know in a month.
So that’s another thing to schedule.
Other things that are happening cancer wise:
- Another appointment with my hematologist
- Labs up the ying yang.
- Possible switch out of some of my meds.
- Consultation with an anesthesiologist to get cleared for surgery.
- At least two more transfusions.
- Platelet transfusions and blood transfusions the day before surgery
- Shots of Neupogen (helps the white cells), 1 shot a day for the 5 days prior to surgery. (I’m doing this at home).
- Oh, and I have to figure out which of the new meds is causing my blood sugars to go crazy and get them sugars down to normal or my surgery will be postponed again until after the new year. No pressure though.
This is all just from today. ITS CRAZY!!!
Just to let you all know: I’m having some very crappy side effects of the new medications I’m on. I’m working with the doctors to either change the dose or the actual medication. One of the worst side effects is that I feel like I’m going mental – I’ll be super happy, then crying my eyes out, then ready to throw something out the window – and this all can happen in the same 15 minute time frame. Part of it as well is the whole “shut down all the hormones” thing I have to do to keep the cancer away. So if yu email me, text me, call me, etc… and I don’t respond right away… I’m probably having a moment. I do appreciate your support and love you all so much!!
1. FIGHT ON USC! BEAT THE FARM!!!
2. Thank you for all the prayers for my grandma. She had forgotten how to eat on Tuesday until my aunt showed her how, but today she was eating and drinking much better. She also got up and walked for 5 tiny steps.
3. I have a few other people that need help right now:
- My Aunt’s ex-husband, the father of her three kids, passed away in his sleep quite unexpectedly this afternoon and my cousins are devastated.
- A man I sometimes end up sharing the counter at Brandon’s Diner, his wife has spent much of the last month in the hospital recovering from a 10 hour surgery to get rid of cancerous tumors.
- My mom’s cousin (96) health is declining fast.
If you could lift these folks up with prayers/good thoughts/however you do it, I would appreciate it!!!
A parting shot of where I will be this weekend for my birthday:
MRI Update: I’m really really sore from the MRI so I’ll discuss that tomorrow. Breast MRIs are a beast!
Had a pretty good weekend.
Friday I spent most of the day with my former neighbor in Ontario. Carol is the lovely woman who took in my cat, Earl, when I had to move into my mom’s house. He is seriously an outside cat but the MHP where mom lives doesn’t allow outside pets. In addition, there are coyotes here in the park and I didn’t want Earl to get eaten. Earl is doing pretty well. He has hyperthyroidism and is super skinny. He’s still perky and a bit mean but he wouldn’t be the Earl I love if he wasn’t.
This is a picture of Earl from a year or two ago:
Our across the street neighbor came over and next thing I knew it was 5pm! I had gotten there at 11:30. Time flies when you are in good company.
Saturday I spent mostly sleeping. I’m just so tired these days. Zero energy. I made my niece a bracelet for her baptism:
This is my first two-strand bracelet. She seemed to like it.
Sunday was Lilli’s baptism. Mom & I met my brother, sister-in-law, Lilli, Lill’s other grandparents and good family friends Barbara & Bill at a buffet joint called “Wood Grill Buffet” in Hesperia. I’m totally restricted on what I can eat so I wasn’t partaking of the food (can’t do buffets) but what everyone else had looked mighty delish. They even have Cotton Candy! It’s really nice and much cleaner than some of those other buffet places.
Lilli’s baptism service was super nice. Most of you know I don’t say I’m Christian as I find too many good things about other beliefs to make one choice (I pray well with others!), but I found the service to be very joyful and even learned a few things. When it was Lilli’s turn to be baptised, she was grinning from ear to ear. She was the one who decided it was time for her and worked with the Pastor and she really wanted this. I’m so proud of her! It was a wonderful night!
Of course there is a picture:
I hope you all had a great weekend!!! Thanks again for all the prayers, good thoughts, healing energy, lit candles 🙂 I feel your support and love 24/7 and am so grateful!
Oh, and how could I forget!?! Fight On USC! Way to go beating Boston College!!!
Oh (2)! Congratulations to my cousins Zoe, Peter and Julia on the occasion of their baptisms on Sunday!