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!
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!!!!
Before you go any further, this ended up being a seriously long and somewhat whiney post!
Yep. It’s my cancerversary.
Cancer folks have all sorts of ways of figuring out this date: date of last treatment, date of first treatment, date of surgery, etc… I decided that it was the date I was formally diagnosed. The day I met with my doctors and heard the news out loud and in person.
August 21, 2013.
It’s a strange day. I’m happy because it means I’m still here. Prior to getting cancer I always thought that it would be the worst thing to happen because I didn’t think there was any real treatment options available to me and that I would probably die quickly. On the other hand, it kind of sucks because, you know…cancer.
I don’t consider myself a survivor. The medications I’m on continue to make me feel like crap and I still don’t have full movement or feeling in my left arm/side. Every new pain brings about a bit of a panic attack – is it back? You can’t rest easy ever and there’s enough physical side effects that you can’t forget about it. I try not to dwell but everytime I get comfortable, something stupid happens. So I consider myself a warrior. I may not have cancer in my system right now but it has certainly marked me.
FYI: Breast cancer is NOT cute and pink.
As far as I know, I’m cancer free. I see my oncologist next week to go over some test results. I have a scan and visit with my surgeon in early October. Usual yearly stuff. Although this is the first year for scanxiety. Last two years I knew I had cancer when I did my tests – this year, I’m hoping that I don’t have cancer again. I don’t think so. Staying positive.
Everyone is still really happy with how the surgery went and my recovery. I swear by my doctors so if anyone needs a Los Angeles recommendation, get in touch with me. I started my post-surgery medicine about 5 months ago. I get a shot once a month of Eligard – this puts me into medical menopause. After the first month of that I started on an AI : Exemestane. This stuff shuts down all the extra estrogen – the kind that keeps your bones and muscles strong. California summers are NO FUN combined with hot flashes.
So the cancer is stable as far as I know. With the heat my arm and side are a little puffy and sore which contributes to the increase in whining.
Plus its F-ING hot here in So Cal!!! I hate it here. I could totally do Alaska 9 months a year and come back to So Cal for January through March. Although I would miss my family and friends. And Taco Tuesdays.
The most recent thing I’m dealing with is a hospital stay all of last week (Sunday 8/9, late in the evening through Friday, 8/14 in the morning).
It started on Sunday 7/19. I started two new medications; both were liquids that I had previously taken but the companies had made these medications into tablets. Much easier to take. I started them both on that Sunday but by that Wednesday I felt like hell and had a low grade fever. I called my doctor and they prescribed some antibiotics to try to get rid of the fever and keep whatever thing I had from getting worse. The following Monday (27th), I was feeling worse, still had a low grade fever and had gained 10lbs (in 8 days!). I happened to have an appointment with my endocrinologist and she looked at my swollen stomach and immediately detected that my gut bacteria was all out of whack and it was probably the antibiotic.
I don’t know why I thought of it but one of the new medicines was an anti-fungal to keep all the bad bacteria from growing in my lungs (it’s usual for someone with my anemia to take these drugs to make up for the fact that our immune systems are super bad). Anyway, after some research, it turns out that the dose for this drug on the first day you take it is 600mg for both the tablet and liquid; BUT the dose for day 2 through x is 300mg for the tablet and 600mg for the liquid. I was prescribed 600mg for every day with the tablet. My side effects were listed in the overdose side effects list. Both my doctor and the pharmacy missed the dosage change. Luckily I have an excellent doctor who knows I research the shit out of things so she took me completely off the drug as soon as I emailed her. (That was monday the 27th)
It had done a number on me already and on Weds the 29th, I went in for my labs and my hemoglobin had nosedived to 5.5 which is a scary low. Like, don’t get out of bed or get stressed or you could have a heart attack/stroke level. So I was scheduled for 4 units of blood (two on Thursday, two on Friday). My blood pressure was super high, but my fever went away after the first day of blood. I did ask to have another lab test done the following wednesday (5th) to make sure that my counts were okay.
I didn’t bounce back from the transfusion like normal but I felt a little better. By end of the weekend my fever had come back. On Wednesday the 5th, I got my labs done and my blood counts were ok but my potassium was super low. Back I went to the hospital on Thursday the 6th for a 4 hour infusion of potassium.
BTW: do you know that potassium hurts while it goes in? Like someone is slicing through your veins with a fire hot razor. I had a major panic attack so they gave me some ativan and put more saline in the potassium so that I could stand it.
I started to feel better again but the next day I went to lunch with some friends that my mom used to work with and I started to not feel well (like when the flu is coming on). The next day (Saturday the 8th), I woke up with a super sore throat, swollen painful glands and a low grade fever. I stayed in, hoping that it would go away but the next day I woke up feeling worse. My fever got too high (102.6) and, after talking to the doc on call, away we went (Thank you Joyce for driving to/from and keeping my mom company!) to Norris for me to be admitted.
I stayed from Sunday night through Friday morning. I had a fever that didn’t go away until late Tuesday. I got a chest xray, cat scan of neck/chest, doses of super antibiotics every 8 hours, and three units of blood. My blood pressure averaged 180/88 so I was put on an ACE inhibitor and some other heart medicine. I was also started on an anti-viral medicine. Now I have a few more pills in my at home drugstore! My fever stayed down.
Another thing happened while I was there. With Aplastic Anemia, you don’t make white cells. This is a huge problem because, well, you need those to fight off any infections. There are two lab results that we are concerned with:
WBC: Actual White Blood cell count (Normal is 4.5 – 10k)
ANC: Neutrophil count (Neutrophils make WBCs work) (Normal is 1 – 1.8)
My counts are usually severely low. My WBC is usually between 0.8 – 1k. My ANC is usually 0.1 to 0.3. On my Sunday night admission blood test, my WBC had plummeted to 0.34 and my ANC was 0.00. Basically, I had no working white cells in my system. So everyone had to wear masks in my room and I had to go on a low-microbial diet. When I was discharged on Friday, my WBC had risen to 0.5 but my ANC was only 0.02.
So, I really shouldn’t have been discharged but it’s a fine line between risking infection at home and staying in the hospital too long and picking something up there. So my discharge instructions are basically: don’t go anywhere, don’t have any visitors and don’t eat anything not made in your house.
I’m doing ok with this. I did go to Target to pick up a few things but I wore a mask and gloves. My daily getting out of the house is driving through Del Taco for an iced tea. I’ve lost all the weight gain plus 5 more lbs. I’m going crazy!!!
No fever though – so YAY! Gigantic headache.
I get my labs done next Wednesday the 26th and hopefully I’ll be cleared to go out more. Eating out at restaurants or food made by other people is probably out for a while. I had to cancel plans with a friend today and another friend is in town from out of country and I can’t see her. Luckily I saw her a month ago. Totally bummed. I also missed my friend’s birthday. The hardest part of all of this is all the plans I make have to be pencilled in. I feel like I”m constantly disappointing people. SUCK!
There is a ton more to say, including a funny story about a urinalysis, but this is already way too long. If you’ve gotten this far, thanks!!! Thank you everyone for your understanding and constant support!!! I couldn’t do this without you!!!