I would have sworn that I’ve updated this blog since last September but apparently not. There has been lots going on. I’ll make this as short as possible so that I can get everyone up to today without making it a novel.
When I last updated, I had just gotten the penis radiation drawn on me. I reread that entry and realized that I failed to note that when they positioned my arm for the new radiation drawing, they pulled my left arm up higher than I was flexible post-surgery/lumpectomy. This was exceedingly painful and I was basically screaming at them to let me move it. They kept asking for 5 more minutes and, when it was over, I was crying and in incredible pain.
The next morning, I woke up and my left shoulder/arm/side were at a pain level 11 and I couldn’t move/lift my arm. No strength in my hand either. If I needed my arm to be in a different spot, I had to pick it up with my right hand and move it. I can’t remember back to what we did other than pain meds. I still have massive pain in this arm and shoulder 9 months later.
Because I couldn’t move my arm, I had to stop the radiation. Got to take the penis outline off of me!!!
Then I got admitted because my platelets went down to 4 and I got a nosebleed from hell. I was about to be discharged from the hospital a few days later when I got a humongous nose bleed and the doctors said, Nope you are staying. My nose bled for about 12 hours. The next day some doctors from ENT came in and were going to clean out my nose and cauterize the bleed spot so that I could go home. They didn’t give me any anti anxiety or pain med but went in with those scary ass tweezers and suckers and stuff. Apparently they saw something kind of far back up my Right Nostril and wanted to get it out. I’m screaming in pain so they start giving me IV Dilauded. Well my adrenaline was so high that my body didn’t react to the Dilauded so they gave me more and then Ativan and then who knows. After 4.5 hours of being tortured, they finally just put a ton of packing in and called it a night. My mom was there and can attest to the fact that it was incredibly traumatic. I started to relax and fall asleep and mom went home.
Apparently, the next morning, I decided to go for a walk. I don’t remember this or most of that day. The housekeeper saw me walk out of my room with blood all over me and the floor. Then I turned around back into my room. She came after me and found me on the floor unconscious with blood pouring from my mouth. They called a CODE on me and when I finally woke up enough, I was in the ICU with a second IV and my entire family and a few extra friends were there. Apparently the hospital called my mom and brother and basically told them that I was not going to make it. They thought that I was having a brain hemorrhage as most of them didn’t know what had happened the day before with the ENTs. I was in and out of it after they were able to wake me up and respond to questions. Next thing I know, my aunt is flying in from North Carolina and my friend Sue was flying in from Philadelphia. It’s been considered that I was possibly OD’d on pain meds during my ENT visit but noone knows exactly what I got. I was out of ICU the next day and home a few days later. I got to have a nice visit in hospital with my USC besties and a nice visit with my Aunt and Sue after I got discharged.
So now, I continue to get nosebleeds that last a minimum of 2 and go up to 14 hours. I’ve learned how to contain them more to the 2 hour range. It’s ALWAYS that same right nostril, so I’m convinced that they just completely FUCKED up my nose. I refuse to let the ENTs near me.
Again my platelets were crazy low, so I stopped taking the Eligard and Faslodex. My oncologist at the time pretty much told me it was a waste of time anyway. I basically decided not to treat the cancer for a while.
I ended up in the hospital again in December for a few days but can’t remember why.
At the end of January, I got a small lump under my jaw. I thought it might be an infected tooth but the lump grew to be golf ball sized and you could totally see it. Into the hospital we go. They attempted to drain it (so fun!) but it ended up being an infection. I couldn’t open my mouth wider than to get a straw in so I was on a mushy food diet and again my pain level was an 11. It was so bad, I had to go on a Dilauded pump with extra meds before and after I ate. I went from 128 to 108 in two weeks. I had to have a CT scan with contrast and because I’m allergic to the contrast they had to give me 150mg over 12 hours before the test of Prednisone. The prednisone actually took the swelling down noticibly so I was on a low dose of Pred for a week after discharge. I was inpatient for 2 weeks. Turns out the infection was caused by a blocked salivary gland so I have to eat sour candy every day. Sour Patch Kids are the best.
Now I’m back up to 112 lbs but I’m having problems gaining weight. I need the weight in case I get sick so it won’t be dangerous if I lose weight while sick. Life is strange.
Within a few weeks after that, I was starting to have massive pressure in my chest and shortness of breath. After tons of scans and another thoracentesis, it was determined that my breast cancer, that had spread to my right pleural lining, had now moved to my left pleural lining and there were tumors in my lungs. I was given a new oncologist and they started me back on the Eligard and Faslodex, even though my platelets are still low. I get those shots once a month.
At the end of March, I was having severe shortness of breath and I was admitted again. I got another thoracentesis and an order for at home Oxygen. So now I’m connected to O2 tanks and compressors most of the time. When my blood count gets low, I have to wear it all the time but, like today, I would forget about it for a few hours and still do okay. This is a forever thing.
My last admit to USC was the first week of April – so I’ve officially gone 2.5 months without going inpatient. HURRAH! I get tired easily so I’m not going out a ton but I can see friends and go on one walking errand a day or every two days. This is better than a month or so ago when I couldn’t walk across the house without gasping for air!
I go in every Wednesday for lab tests and a shot of medicine that is supposed to help with my Platelets. Every fourth Wednesday, I get the Eligard and Faslodex shots. I feel unwell after the Platelet shots until the next day. The day I get all the shots, I feel terrible for a few days. I see my new oncologist on the “big shot” days. I really like her – she seems positive that we can slow down or stop the cancer progress. I’m definitely optimistic.
I’m also getting transfusions pretty much every week now. My hematologist is worried that if my nose really bleeds, my blood count will go too low and it could cause cardiac arrest or stroke. FUN!!! My diabetes is hanging in there…. I’m still here so all is well!!!
I am encouraged by my labs. My oncologist is running the CA 15-3 test every month. This is the tumor marker test for metastatic breast cancer. People without cancer will have a level of 30 or less. My first test a few month ago was 385. My most recent test was 297. Going down is a good thing!!! Fingers crossed that it keeps going at that direction. I did some research and some Stage 4 patients have a 15-3 in the multiple thousands. I’m happy with my little number.
On fun notes, since I last wrote, I have seen a bunch of musicals: Hedwig and the Angry Inch, Amelie, Fun Home, Finding Neverland, The King and I, and Into the Woods. In August & September, I’m seeing Hamilton (WORK!). Mom and I renewed our season tickets for the Pantages for next year and having tickets to Aladdin, Love Never Dies, School of Rock, The Color Purple, On Your Feet and Waitress. I’m also hoping to see Something Rotten and Bright Star this fall.
My mom turned a big birthday this past March and so my brother, sister-in-law, niece and I took her to Universal Studios and we basically spent the entire day in Harry Potter World. I got a great deal from AAA so we actually have annual passes. The summer is blocked out but we don’t have any interest in going in the summer anyways. We are looking forward to hitting the stores in the front of the park next time!
We just had an amazing visit with my cousin Mike and his wife Megan. I hadn’t seen Mike for about 17 years and I had never met Megan other than facebook. They are a wonderful couple and we had a great visit. Megan has a cousin out in LA who took them all over Hollywood for a day or two. We spent the time just talking and talking. Hopefully we can make it to Austin (where they live) within the next year – it sounds like a blast!!! I also have friends and other family that live nearby that I would love to see. Fingers crossed!!!
Next up for me is labs and the platelet shot tomorrow.
Oh, and I have a new cat, Hallie. I had to put down Chester last August. I adopted Hallie in late September. She just turned one in April. I call her “Hurricane Hallie”. She’s mostly sweet then she goes crazy out of nowhere. Typical cat!
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!