Hurrah! Today was day 25 of 33 for Radiation. I have three more sessions of my complicated radiation (three different setups) and then 5 sessions of super quick blasts to my scar area. The idea is to attack the original and recent cancer spots with big blasts of rads to kill the area.
My skin is doing well. I saw the RO Doc on Monday and she said everything looked good. The blasted area is darker but I’m not peeling or getting any sores. I was peeling really bad (so gross, my skin was black and peeling) but I started to use a meshy shower pouf (very gently) and it’s been helping keep my skin soft. That and that nasty but helpful Aquaflor stuff.
Today was an extra long session. I had to get pictures taken. I have no idea why they do this but they do it every two or three days. It adds about 10 minutes. Then I got my regular radiation (1/2 hour). Then they had to do the setup for the 5 scar blast sessions. This took about 25 minutes.
It got a little funny. The RO Doc came in and made red sharpie X’s around the area that needs the blast (my scars and about an inch around the scars). I’m laying there thinking that the places she was marking might make a very interesting pattern. Then she took the marker and connected the X’s. There were a few radiation therapists and a physicist around her watching. All of a sudden, they all started giggling. So I said,
“Dr. Ballas, did you just draw a penis on my chest?”
Why yes, yes she did!
To make it even better, they had to then trace the “shape” onto plastic to create a thing that will go over this area during radiation. They also had to draw it on a piece of glass so they could line it up with the rad machine. I don’t know if you can see the shiny spots but those are stickers that indicate the major lines/corners. I have to keep these on for two weeks. Grrrreeeeaaaaat.
So that was fun.
Tomorrow I have radiation (#26!) in the morning and then I go to the day hospital for blood and my monthly Eligard shot. My counts this week were super low; like I’m not allowed to drive low. My platelets are being affected by the new cancer shots I get so I have bruises all over me. Apparently, this is normal for people in the first part of getting this drug while you get it every 2 weeks. I’m getting it (Faslodex) again next Monday and that is the last 2 week session. After that I get them once a month and the platelets are supposed to recover. My immune system is worse than usual right now too. I’m hoping that once radiation is over and my schedule is more normal, things will get start going up.
So glad to be getting back to normal! Thank you all for your continued support/prayers/healing thought and light. XOXO
Now, about that USC “game.”
That was horrible. I had some hope that USC might win but it was a recipe for disaster to put us, with three coaching staffs in 4 years, up against the #1 team in the country with a settled program. We were totally outmatched.
I thought our defense did great but just got tired.
Ok…that’s the only positive. Our offense started out strong but they got rattled in the second quarter and never recovered. They had NINE “3 and outs.” No way you can win a game with that kind of stat.
This Saturday USC plays Utah State, another non-conference game. I’m not giving up on our team. I know that sometimes you can get kicked in that ass but how you respond to that is what defines your character. I hope that the university, alumni and students gives this coaching staff and team a decent chance to get things together. Even Pete Carroll lost his first few games and look what happened during his reign.
As Always, FIGHT ON!
The last few days of rads have gone off without a hitch. Today was another story.
It’s transfusion week. When I get a few days out from Blood Friday, I get symptomatic. The symptoms get worse as my hemoglobin goes lower – but even on a good transfusion week, I’m still symptomatic.
My HgB today is 8.8. Normal for a woman my age is 12-16. So I’m low, but this is actually not a bad low for a transfusion week. I still have the following symptoms:
- Headache – like a tourniquet around your head; no pain relievers work
- Shortness of breath – like someone is stepping on my upper chest.
- Fatigue/Insomnia – NICE!
- Emotional Disaster – more prone to stress out and not be able to control panic attacks.
When I first started rads a few weeks ago, I was wondering how it would go when I was low on blood. After last week went so well, I didn’t think there would be an issue. I might be tired but that’s no big deal when you just have to lie on a table for 30 minutes. Right?
It actually started a bit yesterday. I was having shortness of breath and noticed that I was not as relaxed as normal during radiation. Then they surprised me with a new CT scan that took about an hour. By the end of that, I was so anxious and generally uneasy.
Today, it was like the first day I was there when I failed radiation. They had to do xrays today and for some reason, it was taking forever to manipulate me and the machine to the proper coordinates. I had a gigantic headache and was getting dizzy. Then I started to have a panic attack. As I was trying to talk myself down from the panic attack, I just burst into tears. Then I felt the shortness of breath acutely. Luckily, they had just finished the first of the 3 stages of rads. As soon as they came in the room, I moved my non-rads arm to wipe my eyes and they all yelled “DONT MOVE!”. Yeah, too bad.
Then they all noticed I was freaking out and tried to console me. I tried to explain that it wasn’t the radiation process that was bugging me, it was the side effects of needing a transfusion that was making me spazz. They didn’t get it.
At that point it was the second part of the rads, where they put this molded plastic thing on me. It absorbs the full blast and filters the rads down to me. Usually they just lay this thing on me and off we go. This time, they decided to tape it down by strapping it from the side of the board I’m laying on, OVER me, and onto the other side of the board. This did NOT help with the feeling that I had something sitting on my chest and I could barely hold it together. One of the therapists wiped the tears from my eyes, which was totally sweet.
Then it was time for the third pass and I was making noise about getting up and leaving, but I hung in there because the third pass is really quick. Then I booked it out of there. I wanted to skip tomorrow and Friday but the therapists freaked out on me (my doctor is in Chicago) so I finally just said, forget it I’ll be here tomorrow, but don’t be surprised if I don’t make it.
So basically, I’m dreading tomorrow. My mom is driving me because after today’s session it took me close to an hour to get calmed down enough to drive home.
I did send out an email that will make me much loved by my doctors. I think I’ve done a decent job of basically doing everything they’ve asked for but I have to watch out for myself. So I’ve decided to cancel my radiation sessions that occur on Transfusion days. There is only so much I can deal with. I want to take the Thursdays off as well, but I know its not good to miss too many sessions (if any) so I didn’t mention that, although I will be letting them know if it’s transfusion week and if I feel like shit, I’m skipping.
Tomorrow should hopefully be uneventful. I’ll either do the rads or freak out.
Friday may be super easy or a complete nightmare.
My possible Friday schedule:
Radiation– not an issue, decided to cancel. It was supposed to be at 7:15am.
- Chest Xray – Because I STILL have pleuritis and some fluid on my right lung
- Punch Biopsy – Next to my most recent incision on my side, there is a concerning lump. So I’ve been told they want to do a biopsy of it on Friday so I have the weekend to heal before they radiate that area on Monday. Punch Biopsy – look it up. Seems unpleasant.
- Transfusion – 2 units
- Eligard Shot – in my abdomen, puts me in menopause.
- Faslodex Shots -2 of them, Intramuscular (meaning, in the ass) , New medicine to me to stop tumors from growing.
- Amacor IV meds – to help me heal from the Faslodex shots. Being intramuscular, I could get serious infections if they don’t heal up. This medicine will help.
The Chest Xray and Biopsy are supposed to be Friday but I’ve gotten no calls from the hospital that they are even scheduled. The doctor coordinating these two items will be in Brazil starting tomorrow (I think) and back to USC on Monday. So I’m just waiting around until end of day tomorrow to hear if Friday will be horrible or not. Grrrr.
Was very hard to fight on today, but I made it through. I just have to get through tomorrow and Friday. Then it is the weekend and I can crawl into a hole and emerge for tea and olympics.
Go Team USA! FIGHT ON USC OLYMPIANS!!!
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!
I promised pictures of the radiation machine today. I found pictures on Google of the exact machine that I am in – the Varian Trilogy.
So I am on the long platform with my head at the end with the big machine. On the platform is a long sled thing that has two arm thingies that raise my arms so that my hands are near the top of my head and a shelf they refer to as “the butt rest”. Then they put a leg rest below the butt rest so that my legs are bent and more comfy.
The platform moves up and down, forward and backwards and side to side. I have marks all over me so that the platform is positioned in line with the radiation angles of the machine. The part of the big machine that is white and grey move 360 degrees around you. At one point the blue piece directly over the platform, moves under me and off to my left side to blast the back of my left flank.
This is a different color machine but you can see what I mean by it rotating.
They keep the lights on while the radiation is blasting, but between blasts, the lights go off and the therapists turn on green laser lines so they can line up and measure the angles of radiation. It is incredibly precise.
Every two or three days I have to extend the radiation party by 10 minutes because they have to take xrays to make sure that all my markings are still in alignment. That’s tomorrow.
Flora and Igor:
Flora is the big blue thing from the first picture. This is what it looks like when you are underneath it.
When this is in its resting position it is about 10 inches from your face.
The teeth start out all closed but then move around based on where things need to be zapped. At one point they all open up and you get this beak like thing in the center, like a thing that’s going to eat you.
I want to say it is 18 to 24″ in diameter. It looks mean – no idea why “Flora” popped into my mind. Maybe the blue?
Igor looks like the top part of Wall-E. When it is right above you, it looks like the giant eye, which made me think of Igor (EYE-gor) from Young Frankenstein (Frohnkinsteen). It didn’t do much today which makes me think that it is used for the xrays. So we may meet again tomorrow. It’s on this arm like contraption so it kind of darts in and out above you and goes up and down, so it is very inquisitive.
Socks of the Day: Leonard from Big Bang Theory
Warning: I’ve included a picture of my torso that shows the radiation areas. It’s safe for work but if you’ve never seen a mastectomied person, it can be a bit jarring.
I did it! I did it! I did it!
After I had the chat with my ONC, I just set my mind that I had to do it. I was super nervous still and I’m still in all that pain but I just dealt with it.
It helped that I took a Norco and chased it with an Ativan a few minutes before I got there. I was feeling rather funky. I also got a better gown. Last week they had me put on this thick blue, long sleeved with cuffs gown that was about 1000 degrees, so today I requested a short sleeve, normal hospital gown. Much nicer.
I got in the room and it was the same therapists from last week. I thanked them for their patience last week and we had a good laugh about it. They ask me if I want music during the setup/rads (about 1.5 hours), and of course I said yes.
Therapist: Can we put on some Classical or New Age? Something calming?
Me: Well, no. Can you put on 80’s Hair Bands?
Therapist: 80’s Hair Bands?
Therapist 2: Who would that be? (for shame)
Me: You know, Aerosmith, Whitesnake, Motley Crue…
Therapist: That’s calming?
Me: No, but it’s definitely more fun!
They found a GREAT pandora station and I spent the setup and radiation listening to and singing 80’s hair bands. I can sing easily from the position I’m laying in although my voice is still crap. I can’t air guitar or drum. They get mad and tell me to lie still.
During the setup, they had to draw all over me with different colors to mark each of the different sections they are radiating.
Everything in the red sections gets radiation and under my arm there is a green section that goes around my side that gets zapped as well. Every section is a different setup position for the machine. They put tegaderm stickers all over me to maintain the key points of the lines. The rest will wash off.
I get 3 sections of Protons (the radiation that goes deep) and 2 sections of Electrons (the radiation that doesn’t go as deep). It doesn’t get zapped from straight down, there are complicated angles that you get zapped so that the radiation hits the area affected and not healthy tissue (or bone marrow areas)
I didn’t feel anything during the radiation. The machine buzzes while you are getting zapped. The machine is nuts. You think there is only one thing above you but then it starts rotating around you and like 6 different parts came out from nowhere. It looked like I was being investigated by aliens.
Of course I named two of the parts: Igor and Flora
Igor is a rectangle and looks like the top eye part of Wall-E. Very inquisitive. (FYI: it’s EYE-gore not EEE-gore)
Flora is circular; blue all around with this metal circle plate in the middle. It looks all nice and sweet but then this section in the middle starts opening up and it looks like a thousand teeth coming to eat you.
I’ll draw pictures tomorrow, I need to get a second look.
I also like fun socks, so I’ve decided to wear a new pair of fun socks each day I go. These are my day 1 socks: The Flash!
32 days to go. Thanks for the prayers and positive energy!
I’m glad I got everyone up to date last Thursday because, of course, things are different. Not too bad, but still.
I had an appointment with my ONC last Friday morning. It ended up being the appointment I should have had weeks ago. She explained to me that I absolutely needed radiation. They are worried that since the small lump they found in February needed operated on in May, that my cancer is more fast growing than they would like. I could just do the Faslodex medicine, but it would take too long to work and I need something that can work now.
So I go back tomorrow to RAD ONC and do the 1.5 hours in the set up chair. Last week I thought I had a choice and I made my choice. Apparently, I don’t have a choice. To make things more interesting, I found another small lump right next to small scar where they just took out a cancer lump. We are keeping an eye on it; it could just be scar tissue. But, it made me realize that I have to get zapped. Grrrr.
It doesn’t help that I still have this weird side pain. My ONC noticed during her exam that I couldn’t take a deep breath so she sent me for a chest xray. It turns out that I probably have pleurisy – an inflammation of the lining of the lung. I also have a small amount of fluid in my right lung. There’s nothing to do about it now but I will get another chest xray in two weeks to see how its doing. Apparently, this stuff just goes away on its own. Unless it doesn’t. Blah.
My last CT scan showed that the spot underneath my sternum has grown but just barely – from 6mm to 8mm. Keeping an eye on that.
I didn’t end up getting my Eligard and Faslodex shots Friday. My ONC wants me to settle into radiation for a while before I start the other stuff. So those shots will start in two weeks. Thank GOD! My hormones are going crazy with the lack of the old medicine and the start of the newer medicine a few weeks ago.
This week is just radiation with a trip to the endocrinologist on Thursday. I don’t think my ENDO knows that I’ve even had surgery. It’s been a while since I’ve seen her.
Nothing else going on. It’s blasted HOT here in So Cal, so I’ve been mostly inside. There is a crazy fire up in the Valley called the “Sand Fire”. It’s nowhere near me, but I have friends that live up that way. So far, everyone is ok.
A bit of Pam Advice: If you’re in pain and you take Norco with an Ativan chaser, DO NOT get on the amazon app. You may accidentally hit purchase instead of delete while playing with your cart. Luckily it didn’t cost much but I’m now the owner of the “FUN HOME” graphic novel.
It’s not like things have been quiet the last month, but every time I would think that it was a good time to write a new post – something stupid would happen that made the post old news.
The last month or so has been SO FRUSTRATING!!! There have been two highlights.
- My Aunt Brenda visiting us from North Carolina for a week. It was so awesome to see her!!! Can’t wait until I can get back there.
2. A group of friends and I went to see “Beautiful – The Carole King Musical” at the Pantages Theater here in Hollywood, California last week. The musical was fun (I’d give it 3.5 stars) and hanging out with my friends was wonderful!
Other than those fun things, I have been totally overwhelmed with the SHIT I am having to deal with with this cancer recurrence.
What they did during surgery:
- There was the initial lump that we found in february that was on my left side. There is about a 1.5 inch up/down incision there where they popped out that tumor. To be honest, I didn’t even remember that I had surgery there. No pain, no nothing.
- I had another tumor in my clavicle, nestled snugly around a vein between my pectoral major and minor. That was more of a pain in the butt. They had to cut through and remove a part of the pec-major and remove the pec-minor. Then they had to cut through my vein and pull the tumor out. Luckily my body did what it was supposed to do and it created a capillary that went neatly over the tumor. I did not lose any circulation – thank goodness. This has been a huge source of pain and suck. The scar is about 5 inches long and runs from just under my armpit diagonally up my chest. They say that I might not get much strength back in that arm. And it makes my shoulder roll forward a little so I look a little dented.
So I had my hospital stay (read prior post) and then I got to go home. I slept on the couch for a few weeks as my arm just wasn’t comfortable anywhere. I’m still unable to really sleep comfortably on my left side.
I’m not bouncing back from this surgery like I did from the mastectomy. I think that the length of time I was under (4 hours instead of 1) played a part, plus that I had that horrible night in the ICU. I was much happier at home but still stressed because I couldn’t drive. My mom did everything in her power to make that a non-issue but I hate relying on people for stupid things (like getting me an iced tea).
After a few weeks, I was healed enough to be released from post-surgery care. I didn’t do Physical Therapy as I had done the home exercises faithfully and got my arm working again by myself. So this was when I expected to hear about my treatment plans.
Except, I heard nothing. NOT A THING. Nada. Zilch.
I even emailed….got nothing.
Finally I got an email saying that I’m having radiation and a drug called danazol. Oh, and stop your estrogen blocking drugs.
What? You mean the radiation that they REFUSED to do to me when I first got diagnosed because it could permanently damage my bone marrow and that would be worse than getting cancer again? and WTF is danazol?
So I had to research it myself.
Danazol is an androgen steroid that is testosterone based. It has helped breast cancer by smacking the tumor with hormones which overwhelms it and it stops growing. The drug also has been known to pump up bone marrow function. It also has a ton of horrible side effects.
“Everyone” agrees that I need to do radiation. The pathology report came back from my surgery and they weren’t able to get clear margins on either tumor. This means that there are microscopic levels of cancer remaining in the tissue near where the tumors were. So they want to zap those areas with radiation to kill them. There is a spot near my sternum that they weren’t sure they would have to Zap and if they did, my hematologist would have to get involved.
This makes sense to me. Zap! Zap! for 33 days. As light of a dose as possible so that my bone marrow is spared. I agreed to this, met with the Rad-Onc doc and went in two weeks ago to have the planning session.
After the planning session, my ROD (rad-onc-doc) told me that they were going to have to radiate that spot near my sternum and she was going to talk to my Heme (atologist) before I saw her myself a few hours later.
I went to the Heme and we chatted and we were both uncomfortable with the ROD findings and I made the decision to NOT move forward with radiation but I would start on the Danazol. (Started two weeks ago, no issues except really good blood sugar numbers).
The next morning (back again for transfusion) I ran into the ROD at Starbucks and told her that after talking to the Heme, I wasn’t going to do radiation. She gave me a funny look and it turns out that she, my Heme and my Onc had had a lengthy email conversation the night before and had all decided that I WOULD be having radiation. Nice to know that my opinion counts. So I went OFF about not getting a clear plan and not being involved and later on my Heme came to talk to me about what had changed her mind.
Apparently, the next logical place for my cancer to spread (and it will) is to the nerves in my shoulder. If it moves there, it would be considered inoperable and I would be at a level of pain that would require me to basically be sedated. So the three docs decided that I would have radiation in the original spots and not to the places near the sternum.
At this point (2 weeks ago), I’m getting really pissy. I honestly don’t feel like I’m getting a straight story from anyone. Ready to move to another hospital for treatment. Anxious all the time. I just burst into tears at any point (this is still happening).
At this time, I find out that I am going to go on a medicine called Faslodex. It is used when a person has the type of cancer I have and got a recurrence while on hormone blocking drugs. The deal is that it is two shots in the butt, every two weeks for three sets of shots, then shots once a month for …ever… With my lack of platelets, it is dangerous to get shots in the muscle because they can cause internal bleeding and infections. So when I get these shots, it has to be after a blood transfusion so I’m as blooded up as possible. ALSO, this drug is for post-menopausal women, which I am not, so I have to go back to getting Eligard shots once a month to smack me into menopause.
The reason for the Faslodex? They saw an interesting spot under my sternum at my last PET/CT. It was super small so we’ve been keeping an eye on it. They were hoping that it was just some scar tissue from the pneumonia I had in February. Well, in looking at the CT from the radiation planning session, it looks like it is growing.
In order to biopsy it or get it out, they would have to break my sternum. Much like an open heart surgery. The faslodex is being used to hopefully keep it where it is.
Yesterday, I went in to have my first radiation session. I knew it would be longer because they have to do all of this setup and calibration the first time. I was going to be dealing with that for an hour. Then the zaps. I’m a curious person so I started asking the therapists about how long I would be there and the length of time getting radiated.
1 hour for setup
30 minutes for radiation.
30 minutes is quite a bit longer than the 10 I was told. The therapists even started saying 10 and the ROD said, no, she’s 30. Then I looked at where they were set up to zap me and it wasn’t just the 2 places, it was 5 places. One of the places was just barely missing the sternum. I was told we weren’t going over there at all. I asked her to explain it to me and she got defensive like I was telling her that I didn’t think she did a good job or something. So I went back to the radiation machine room. I had been crying most of the day, panic attacks left and right. I tried to hold it together but I lasted about 10 minutes before I had to get out of there.
When I get panic attacks, I feel like I’m being strangled. The position they needed my head in for 1.5 hours was slightly tilted up. I knew I could breathe but it felt like someone had their hands wrapped around my throat. So I said forget it.
My ROD went to talk to my ONC and my mom and I up with them. They told me to take the rest of the week and I made another appointment for next Monday morning to try again.
Tomorrow I’m getting a transfusion. I may or may not be getting the Eligard and Faslodex – it depends on if the insurance can approve it in time. If not tomorrow, I will start them in two weeks at my next transfusion. I am ok with these two drugs. This makes sense to me.
I am so uncomfortable with the radiation. Please don’t say how easy it is and how you don’t feel it – those aren’t my issues. My issue is the possible damage of my bone marrow. Mine already sucks, if it gets further damaged (and we won’t be able to see it coming, it’ll just happen) then I’m looking at being in the hospital a few times a week for infusions and not a long life of that. That doesn’t sit well with me.
I see my ONC tomorrow before my transfusion and I have tons of questions for her. I also emailed my HEME and asked her about the extended radiation.
I’m wondering if my panic attack the other day was because my subconscious is trying to tell me not to do it. I guess it comes down to whether I’m more worried about getting cancer again or damaging my bone marrow beyond repair. I think my bone marrow wins. But I’m going to get my questions answered before I make a final decision.
I’m also looking at alternative, more natural methods. But that’s another blog post.
I’ve just felt so sad and angry and depressed about all of this. I’ve been praying and meditating and I get to a good place but then I get a text or call that the variables have changed and the good place has to be tossed aside and I’ve got to get there again…lather rinse, repeat.. I’m just so tired.
Other than this crap, I’m okay. I have things to look forward to. I just have to make a decision and stick with it.
Thanks for getting through this with me. It’s hard for me to express my feelings in real life but easier to let you all in on things here. Plus there’s no crying for you to deal with.
Although with my med changes, I’m experiencing hormones for the first time in 3 years. I don’t want them anymore!!! Bring on the shots!!!
Hope you are all well! XOXO