Saturday, June 27, 2015

How did it happen?

I don't yet know HOW I got cancer, and I may never know. Don't even think about telling me it was God's plan, fate, because I wear deodorant or drink coffee or whatever else you read in some email forward, etc. I really don't want to hear anyone's theory but my doctor's. But I can tell you how it came about that I got diagnosed. Let me be your object lesson (I've said that a few too many times in my life, I'm afraid.) I am a classic avoider: I will bury my head in the sand for as long as possible before facing my demons. It rarely works out well, and this is another example.

I don't recall exactly when, but I believe it was July 2014 when I found it: a swollen place on the side of my right breast. It didn't feel what the scary kind of lump should feel like: it was too big and round, it didn't move easily, and it hurt a little. I read on the internet and talked to friends, but I didn't have health insurance or money to go to the doctor. It wasn't just the money for an office visit I needed; I knew they'd want to do tests and that would get expensive. So, I thought it sounded like a swollen lymph node. Often harmless, often go away by themselves. Wait it out.

It didn't go away. In fact, it got bigger. It got to the point where my breast was visibly distorted because of the thing inside. Still I waited. It got bigger, and I waited. I still had no insurance or money.

Finally, things started to get better for me financially, but the thing in my breast was getting bigger and more uncomfortable. The very few friends who knew about it begged me to get it checked (I didn't tell my family because I didn't want to worry them...sorry, guys). I told myself I just needed to get some other things taken care of (taxes filed, divorce filed, etc.) and then I would be emotionally ready to deal with whatever this thing was. I was convinced it was not cancer. It was too big and painful, I felt fine, cancer happens to other people, I'm too young, etc. The classic lies.

I was finally about to the point where I was ready. I knew I needed to go in. I had the money. Michael pledged to help me if needed. Dana, my good friend and massage therapist, gave me some tough love and told me to get in to the doctor NOW. So I started making phone calls...must have been around the beginning of June (2015). The first place would not take cash paying patients. WTF, really? The next place was booked until July. Another place could get me right in, but it would be over $300 just for an exam, no treatment. I was getting upset and frustrated.

Finally, someone suggested Planned Parenthood. I had been there for birth control and qualified for a program there but did not realize they could help me with this. I suspected there was little they could do, but they could at least get me in, give me a breast exam, and maybe give me some options. So I went.

As I suspected, the doctor gave me an exam and said "Yeah, you really need to get that diagnosed." errr...thanks. I kind of knew that. At that time, she said she did not feel any swelling in the lymph nodes, just the breast.

What I wasn't prepared for was what happened next: she not only referred me to the right place to get a mammogram and whatever diagnostic tests I would need, but she told me it would be covered under Every Woman Counts, a program for women to make sure they get breast exams and pap smears.

It took me a week just to get an appointment because PP had to fax my info to Sutter, there was some kind of issue there, Sutter couldn't' find it, etc. Then they finally made me an appointment for the following friday (6/19/15), about two weeks after the initial exam.

Three days before the appointment at Sutter, I started not feeling well. Generally just run down and easily tired. I started to worry. What would they do? Would they find anything? Would I be like those women I read about who could never find out what this swollen thing in their breast was, who went through months and months of expensive tests to find out nothing and still be in pain? Or would it be cancer? Or would it be a simple infection, treated with antibiotics?

So I went to the appointment. This would be my first mammogram ever. Because of the painful swelling, they opted for a 3D mammogram, which I guess is fairly new. It was not too bad. They did an ultrasound of both breasts, then decided to drain the fluid out and biopsy not only the breast, but a lymph node in my armpit that was now swollen. On a side note, I'm hoping that since the first doc did not detect any swelling, that the cancer has just now metastasized and therefore hasn't gone anywhere else, but that remains to be seen.

The draining was the worst part. Not the actual draining itself, but after removing a highly compacted 50cc or so of fluid, all the tissue had to readjust (my breasts are not large, so that is a huge amount for the area it's in). After that, the biopsy was nothing. They used a lot of local anesthetic through the whole thing. They told me the results would be sent back to my doctor at PP and I should hear by Tuesday or Wednesday.

I was not prepared for how sore and tired I would be for the next few days. Perhaps because they did a lymph node, perhaps because I was already a little compromised. In any case I spent a lot of time in bed.

Tuesday morning I got a call from PP. My heart was pounding in my chest. They said I needed to come in ASAP for results and made an appointment for 1:00 that afternoon. They told me to bring a support person. My heart was no longer pounding in my chest, because it was in my stomach.

I hung up the phone and cried my eyes out for probably 10 minutes. I updated a couple of close friends and my bosses, who knew what was going on. They urged me to not assume the worst. Maybe it was just something that needed surgery. Don't freak out until there's something to freak out about.

My good friends Kim and Dana went with me to the appointment. Dana came into the office with me to take notes while Kim waited in the lobby and got updates via text. The tech opened my file and asked me if I smoked. I said 20 years ago I did. She asked if it was just to try it out or what. Annoyed, I answered "I was 20. I smoked for like a year." That was not a good omen.

Finally the doctor came in. She told me the biopsies showed cancer cells. At that point, I didn't hear the majority of whatever else she said.

Cancer. I have cancer. The words rolled through my mind, over and over, while she talked and Dana asked questions. There would need to be more tests to determine how far it had gone, the grade, stage, etc.


She left the room. I got a much-needed hug from Dana and texted Michael as I knew he'd be stressed out waiting for news. I wish I could have given him something happier.

At some point, PP's cancer treatment coordinator (I think that's her title) came in to tell me about next steps. She said she was putting me on Medi-Cal and a breast cancer treatment program through Susan B. Komen. Everything would be covered, and since I was on Medi-Cal it would be full coverage, including vision and dental. Huge sigh of relief. I was not alone, I would be able to get the treatment I needed, and there was hope. She said she would refer me to oncologists who work with the program and then we could move forward.

And that's where we're at now. I'm still waiting to get an appointment but I'll call on Monday and light a fire.

I was stupid. I let this thing go way longer than I should have. I will pay dearly for my tendency to bury my head in the sand, but I won't pay the ultimate price. I've heard many survival stories over the past few days, and I'm confident I will beat this. I'm dreading the treatment and the changes to my body, but I'll be alive.

I was selfish to wait so long. I told myself it was my body and my life, but it's not just about me. It's about my family and friends. It's about my parents facing the fact that their daughter, their youngest child, has a deadly disease. It's about my daughter. It's about my boyfriend, with whom I'm madly in love. I should have gotten myself checked earlier for them, if not for myself.

Don't be me. Don't do this to yourself or your family. Go get checked. Do a self exam right now. Make an appointment for a well woman exam. If you're a man, do what you need to do to make sure you're healthy, too. It's not just about you. If you think you can't afford it, there are options for you. There are programs. Look into it. I'll post resources as I gather them since I need a place to keep them organized anyway.


  1. Like you, I refused to see a doctor due to lack of money. Fortunately I'd heard about a program for Illinois residents and I quickly took advantage of it. Good thing, because I had Stage II breast cancer. I would recommend everyone who suspects cancer to call their local cancer center to find out if their state has programs that cover mammograms and pap smears.

  2. It's a good lesson you're teaching others not to wait. I too, with my condition, waited too long, and I ended up with CTEPH when I might have been able to be treated if I'd gone in earlier and not ended up with a terminal illness and only treated the massive PEs. It's possible-and I wish I hadn't waited so long.

    But neither of us can look back now. We can only stay positive and look forward. I've beaten all the odds, Jennifer. Every one of them. And I feel I've gone it by staying positive and joking and laughing and loving--the same way I know you live your life now. So you're going to beat every statistic and odds to.

    We're outliers, you and me. That makes me in pretty damned good company.

    I love you, lady. I'm glad you're taking care of you!

    Love and cancer fighting stuff,