I just looked at my blog and saw that my last post was on August 3rd. So much has happened since then it feels like ages.
Edited: I just finished this post and it is REALLY LONG! Don’t say I didn’t warn you 🙂
So I had outlined a bunch of things that were going to happen that Friday, August 4th. I did most of them.
- Punch Biopsy of lump next to where my previous surgery was. My surgeon couldn’t get the punch biopsier thingy to do what he wanted so he ended up doing a lumpectomy. He had just given me a local anesthetic but it didn’t hurt much, just mostly tugging. I didn’t know he was doing a lumpectomy until I saw the specimen jar that he passed over me to the nurse. Instead of being a small circular specimen, smaller than a pencil eraser, it looked more like a mini marshmallow. I wish I had had my camera because it was kind of cool.
- Results: another local recurrence of breast cancer. la di da.
- Chest Xray – well it turns out that I had 1.5 litres of fluid in my pleural lining. I know this because at the end of my transfusion, I wasn’t able to breathe. All the blood that was infused into me combined with the fluid in my pleural lining and created a huge pressure on my chest and I couldn’t breathe. (O2 sat = 80%). So I ended up getting admitted to Norris for the weekend and the next day had a thoracentesis.
- Result: Pathology report comes back with the pleural fluid malignant. My breast cancer has metasticized into malignant pleural effusion. Stage 4. SO FUN!
- Freak out a bit. Talk to my oncologist who tells me it’s not a 4 month prognosis if we can keep the fluid under control. So I probably need a pleuradesis which requires a 7 day inpatient stay. (LIES! It was a 13 day inpatient stay)
- I didn’t get the Eligard, Faslodex and Amacor. It was already a crazy day.
I got out of the hospital on Sunday, August 7th and on Monday the 8th, I started having the shortness of breath again. I had another chest xray on Tuesday that showed that my pleural lining had already filled up again and got signed up for ANOTHER thoracentesis that Thursday, the 11th.
Let me tell you, thorcentesis SUCKS! You are sitting up with your legs hanging over the side of an ultrasound bed with your arms and head on a pillow that is at a comfortable height on a table. So the position isn’t uncomfortable. Then the radiologist does an ultrasound on your back to find the area with the biggest amount of fluid. Once they find that spot, they sharpie it. Then they inject you with lidocaine (this SUCKS and HURTS!). After you are numbed up, they stick a needle into your back, through your chest wall and into the pleural space. Then they retract the needle, which leaves a catheter and stick the free end of the catheter into a vacuumed 1 ltr bottle. Then the fluid gets sucked out of you. It takes about 5 minutes for 1.5 litre and they stop when you start coughing your lungs out. They remove the catheter then slap a big bandage on it and off you go.
That Thursday, my friend Amy (who sat with me and ordered people around all day when I was having multiple panic attacks) and I mosied on to Norris. On that day, I did this:
- 1 unit of platelets
- This is where I had anxiety attack number 1. I hate getting platelets and have to have tons of premeds in order to not have bad reactions. Unfortunately, I have bad reacations to the pre-meds (IV Hydrocortisone specifically)
- 1 hour of Amicar (platelet medicine)
- Eligard shot (monthly to shut down my hormones)
- This was where I had anxiety attack number 2. Full on breakdown. Panic Attack brought on by a reaction to the hydrocortisone. I couldn’t stop shaking and crying. I felt totally crazy. The radiologist said he couldn’t do the procedure if I didn’t calm down. So I just steadied myself and they started the procedure. Unfortunately the place they had to insert the needle was just next to where they had gone in 6 days prior. So that felt lovely. They took out 1.4 ltrs but had to stop because I started coughing and then dry heaving which kicked off anxiety attack number 3. They patched me up and then Amy commandeered a wheelchair and a transport person and we went back to the day hospital where I had to get
- 1 more hour of Amicar
- My two faslodex shots.
- These are intramuscular shots – 1 in each hip. By this time I was a freaking mess and didn’t think I could do it but I sucked it up. They stung like bitches but it was all over. And afterwards, Amy and I ended up at a Red Robins in West Covina and had the best freaking hamburgers on the planet.
By Sunday, I was short of breath again. On Monday the 15th, I had another chest xray that showed I was full up of fluid again. I had an appointment with my oncologist and she said that it was advisable to try a procedure called pleurodesis. I would be inpatient for about 7 days (LIES!) and the procedure wouldn’t be painful just a lot of uncomfortable pressure (MORE LIES!). The procedure wouldn’t cure my pleural lining cancer but it would make it so that I wouldn’t have to get my pleural lining drained ever again.
First they put in a pigtail cathether. The person scans for a good placement using a ct scanner. Once they find a good spot, they inject you with shit tons of lidocaine (PAIN!). Once you are numbed up, they make a little incision and start weaving a long needle into your pleural lining. This is the part that is only supposed to be pressured but it hurts LIKE A BITCH!!!!! Once they get the needle in, they start inserting these expander things in so that your pleural lining opens up to the size of the catheter. This sucks. I was basically screaming. Pressure my ASS! Then they run the catheter up and remove the expanders and needle. Once they do this, 90% of the pain goes away immediately. Then they slap a bandage over the tube coming out your back and hook the catheter up to a bag. When they hooked me up to a bag, they anticipated moving me up to my room, but the bag filled up so quickly, they had to drain it. (600 ml) Then the bag started filling up again and I told them to wait and they freaked because the bag started filling up again super fast. Then I had another panic attack because the fluid was leaving my body so fast that my lungs couldn’t expand fast enough and I couldn’t breathe. So they had to mainipulate the bag so that it would fill up and nothing would drain so that my lungs could catch up. So they spent about 10 minutes letting the bad fill up, then drain a bit, fill up, drain a bit,… until I was breathing easier. All in all, they drained 1.3 ltrs from me in the fifteen minutes post placement.
Best part of this procedure: You absolutely cannot get the bandage wet. So no showers for me for over a week. My hair was SO DISGUSTING. I was able to do sponge bath stuff but still…blech.
They gave me pain meds that night but the next morning I woke up with pleurisy pain on my left side. I was in so much pain that I was basically on dilaudid for two days. I hardly remember anything. My mom brought me a care package that had been sent to the house and when I tried to email a thank you, I couldn’t remember what to type or what words were. It was so bizarre. So to explain why I didn’t post much or send thank yous for the cards, care packages, etc… it was because I couldn’t put two words together. I couldn’t even keep a conversation. If I wasn’t in so much pain it would have been sort of hilarious.
The next few days, they do a chest xray every day and monitor the fluid output. My output went to 20ml/day in a few days. So they did the pleurodesis. They shot me up with dilauded and then the thoracic surgeons shot medical grade talc into my catheter. The purpose of this is to irritate the pleural lining so much that it gets inflamed and the lungs and lining stick together, therefore removing the space where fluid could build up. It’s purpose is to avoid having to have thoracentesis all the time. After they inject the talc, you have to lie on your back, then right side, then stomach, then left side, each for 1/2 hour so the talc spreads around. I didn’t care because I was still out of it from the dilauded.
Starting around this day, I was so tired from the pain that I was basically in panic attack mode 24/7. They kept me hopped up on anxiety and pain meds. Oh, and I had sprung a slight fever so they went to the protocol for aplastic anemia and I was put on two IV antibiotics every 6 hours.
After a few days of no fluid drainage, they came and gave me more dilauded, and pulled the catheter out of my back. That was Wednesday and I had no draining or fluid build up (chest xrays every day) so on Saturday I got to come home.
Somewhere in there I got a platelet transfusion and a few units of blood.
So now I am resting and recovering from the hospital stay. My lower lungs still aren’t totally back to normal so I get short of breath easily. My back where the catheter was still hurts. Usually after a hospital stay, I feel fantastic. This was the worst I’ve felt ever. Worse than the mastectomy. I still feel like crap but at least I can breathe!!!! It’s going to take a while to get back to normal.
Tomorrow: Radiation (#17), Rad-Oncologist appt, possible Amicar infusion and faslodex shots.
Finally, a normal day!!!!