- Welcome to my 1300th post. Crazy.
- My oncologist says I don’t have bone mets. He says it’s most likely post-mastectomy pain syndrome. Basically, it’s nerve damage caused from all the surgeries. There’s nothing to be done except take more pain meds. Apparently it’s quite common.
- I’m relieved obviously, but I’m also like wtf. I mean it’s always something, right? I have yet another chronic pain condition? Fucking seriously?
- My body clearly hates me.
- Oh and the insurance situation is so fucked. I don’t even know where to start with it. Honestly…I just can’t today.
- I hardly slept last night due to anxiety, so I am way out of it today. I can barely keep my eyes open. It’s going to be a long day.
- On a completely unrelated note: **Girls spoiler alert** I really enjoyed last night’s episode where Adam and Mimi Rose ended up hanging out with each others exes. I kept imagining myself and Dave in that situation, which was humorous. I think somebody would get cut.
- I’m ready for my weekly lunch date with the bf. I need a hug, and
My stomach hurts like all the time and it’s freaking me out. I’m convinced it’s cancer related, like mets or something. I went to urgent care in January over this same pain and they ran a bunch of tests, did a scan, and told me no evidence of cancer. Just evidence of ovarian cysts. It’s most likely a gallbladder problem, or maybe an ulcer, but once you have had cancer, every ache or pain becomes OMFG my cancer is back. It’s fucking exhausting, honestly.
On top of that, this move has kicked my ass. I’m making good progress on setting everything up, but it’s slow going, and I’m tired. I’m also not sleeping well here because my anxiety is flaring. I’m planning on popping a xanax tonight because I’m over it.
So I guess I need to make an appointment with the new doctor my insurance decided to assign as my primary when they changed my policy to save themselves money. Everything requires a fucking referral now, and they treat me like a piece of shit because they consider my insurance to be Medicaid, despite the fact that I pay $600 per month for it. I know I should be grateful to have coverage at all, but really the ACA just took away the right to discriminate against pre-existing conditions and was like: here’s some super expensive insurance that almost no decent doctor will accept. Good luck.
I ran a 9 min mile last night. Two miles in less than 20 min. And that was with a headache, joint pain, and stomach pains. That’s pre-cancer treatment pace! Maybe all is not fucked.
I try not to be too pushy about politics. When I was much younger, (think high school and early college) I was all about being vocal about politics. (In fact, I was a Young Republican and College Republican back in the day.) Nowadays, I identify as a liberal, but I keep most of my political opinions to myself. I do this mostly because I have never really found that a heated debate (and it’s always a heated debate) changes anyone’s perspective, and I don’t suffer fools gladly. That said, there is a topic I feel compelled to discuss: “Obamacare.”
It annoys me that it’s commonly referred to as Obamacare, instead of the Affordable Care Act (ACA), like calling it Obamacare is some sort of slight, but that’s besides the point. The point is: Obamacare saved my fucking life. It’s that simple. I am one of those unfortunate individuals with a preexisting condition. When I became self-employed in 2010, I was unable to obtain health insurance, and god knows I tried. I was denied by every major health insurance carrier in the area because I have psoriatic arthritis, and the medicine I was taking at the time cost over $2000/month. I was lucky enough to get medical treatment for free from my law partner’s ex-wife, who is a physician. She was kind enough to reach out to my rheumatologist and ask him to treat me for free, which he graciously and unbelievably agreed to do. He provided me with meds, for free, up until I finally received health insurance coverage in October 2012. That coverage was made available to me through the Federal High Risk Health Insurance Pool, aka Obamacare.
On November 1, 2012, I was diagnosed with breast cancer. I cannot even imagine what would have happened if I didn’t have health insurance at the time I was diagnosed. Instead of getting the run around, or turned away, I received amazing care from one of the best cancer treatment centers in the country. And FYI, this coverage isn’t free to me. In fact, it probably costs more than your health insurance does, and I’m paying for it, not you.
So why am I posting this? Well I got an email today about all of the efforts the Republicans are making to get rid of the ACA, and it pissed me off. This was the straw that broke the camel’s back, so to speak. I have suffered through endless Facebook status updates about how evil Obamacare is, some posted by my own family, and have said nothing. But I’m done with that bullshit. I want someone to tell me why it’s fair that you can pay less than me, to get treated for the same condition, as long as your condition is not discovered until after your insurance is in place? I want someone to tell me why you are entitled to adequate health care, but I am not. I want someone to look me in the face and tell me that I deserve to die from my cancer because it’s “not fair” that you will have to foot the bill for my treatments, which isn’t even the case. I’m the one paying those monthly premiums, and I’m also the one paying the 20% that isn’t covered by the policy. Not you.
Is the ACA perfect? Of course not. I’m not claiming that it is. Here is what I am claiming: Your health is not more important than my health. I don’t deserve to be refused adequate care for my health problems because insurance companies don’t want to pay, and the cost of healthcare in this country is obscene. This system is broken, and it needs to be fixed. The way to fix it is not to stop providing care to those who need it the most. Anyone that thinks that any human being should be denied necessary medical treatment is not someone I want to know.
I have picked up a bunch of new followers, and have received some very nice messages from blog readers. Thanks, everyone. It means a lot to know doing this makes a difference, and that I have support from so many people.
Chemo Day 7: Feeling pretty good. Not normal, but much better. I’m back at the office today, which is great. I was slowly losing my mind by sitting at home.
Poor Jackson is sick. Both of his ears are infected. I took him to see the doctor yesterday afternoon, so now he has antibiotics, and is hopefully on his way to feeling much better. He’s with his daddy until tomorrow. I miss him. I’m taking him to do this on Saturday. He’s going to flip. He’s obsessed with trains, especially Thomas, and they have a Thomas ride for the little ones. Thanks to Nini for telling me about it.
I’ve started to lose weight from the chemo diet. Nothing tastes right anymore. I’ve so far discovered that soda and ice cream are gross now. I’m trying to find stuff I can tolerate, because I’m not getting enough calories. I’m four pounds away from being considered underweight. I never thought I’d have this problem as an adult. Ha ha. I had this problem a lot as a teen. The good news is that, for once, my weight doesn’t change my breast size. The silver lining.
I feel so scattered nowadays. My thoughts are all over. I am having a difficult time concentrating. I think this is commonly referred to as “chemo brain." It’s here.
We have to do something to help the mentally ill.
My surgery was moved to Wednesday afternoon. I’m pleased, because it means one less day with cancer. The only thing that sucks is that I will miss my appointment with my Rheumatologist, which is currently set for that afternoon, and I really need to see him. My joints are a total mess.
Stupid medical conditions.
More importantly, I need to talk to my Rheumatologist to see if he thinks that taking Enbrel caused (or contributed to) the breast cancer. I’ve done a bit of research on that issue, and there are conflicting opinions. When it was first prescribed for me in 2005, after all the other options had failed, I was told that taking Enbrel would lead to an increased risk of Lymphoma and “other cancers”. Regardless of what he believes, it will be up to me to decide if I will resume taking Enbrel (or any other TNF blocker) to control the symptoms of my psoriatic arthritis. This is actually a huge decision, because without this medication my joints are typically too inflamed and painful to allow me to function in my day to day life. I feel like I’m fucked if I do, and I’m fucked if I don’t. I wish there was a way to know for sure.
I kind of hate my body, because it clearly hates me.
I went to Barnes today for a bone scan and CT scan. It took all day, and I’m exhausted. This is the most active I have been since my surgery. I saw my breast surgeon in the late afternoon to go over the results. Both scans were clean. The lymph nodes in the left arm are definitely cancerous, so they have to go, but the cancer doesn’t appear to have spread to any organs or bones. This is amazing news. So my breast cancer is Stage IIB, which has like a 74% survival rate. I am so very relieved. I cannot begin to describe what I felt when she told me the results.
I’m going to have another surgery, likely next Thursday, to remove the remaining lymph nodes. It sucks, because (1) it’s another surgery, and (2) it puts me at high risk of developing lymphedema later in life. But I’ll make the best of it, do all the physical therapy, do the exercises every day and forever if that’s what it takes, and wear the compression sleeve when I run or get on an airplane. I can handle that. She said being thin is a big plus, because obesity/rapid weight gain is a huge factor, so that’s good too.
During surgery, they are going to insert my port for chemo, which I will likely start the first week of January. This will allow them easy access to a vein every time I go in for chemo. I am waiting for my referral to the oncologist. It doesn’t sound like I will need radiation, which is awesome, because that means we can move forward as scheduled for my reconstruction. By summer, I should be cancer free and sporting a new set of super awesome boobs. Go me. Fuck yes.
Seriously…best news ever. At least until they declare me cancer free. ❤
My surgeon called with the pathology results. Microscopic cancer cells were in all three nodes. Now she wants to do another surgery to remove the remaining nodes in the area. I’m a little annoyed about the second surgery, as St. Luke’s does the biopsy during the original surgery, and then will take out the remaining nodes if the biopsies show cancer. That makes a lot more sense to me.
I’m going on Friday to have a PET scan and CAT scan. This will show where else the cancer has spread. Let’s hope it hasn’t.
I’m trying to stay positive, but it’s difficult.
I’m particularly miserable today. All of my incisions are sore/itchy, my right knee is extremely swollen, several other areas of my body are swollen, including my cheeks (wtf?), and I can barely walk.
I’m really hoping that the swollen nodes above the neck are related to the psoriatic arthritis. It’s truly unfortunate that I’m having a bad arthritis flare at the same time I’m recovering from a double mastectomy. Good luck…I have none.
Still, I’m trying to stay positive. Even if it has spread to the lymph nodes above the neck, it would still only be stage 3. It’s only stage 4 if it has spread to other organs or distant nodes. Friday can’t get here soon enough. I just want to know. Enough with the fucking waiting.
I need to call my mom and sister to tell them. I’m dreading it. They are going to flip out.