And a month later…(Really long)Posted: July 21, 2016
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