Tuesday, June 30, 2015

The bright side of cancer

I have to write this post now, before things start getting hard, while I can still look at the bright side. If you hear me moaning and groaning and wallowing in dark thoughts, please remind me of this post! Feel free to add to it.

While cancer is a terrible thing, there are some positives:

  • I have never felt more loved. 
  • I know just how amazing my friends and family are, and I'm making new ones left and right.
  • Maybe I'll get new boobs out of the deal. Maybe just a tiny bit bigger and nicer. Maybe they'll take some belly fat to make them.
  • Thinking about dying my hair crazy colors before I lose it. I would never do that normally.
  • Maybe I'll lose some weight.
  • I've learned a ton about cancer and the options available to women in a short period of time. More to come!
  • I'll have an excuse to wear scarves. I've always loved them, but not being much of an accessorizer I never wear them. And maybe hats.
  • I'm learning to tell people I love them a little more often.
  • Women I know and care about are getting mammograms because of me.
  • I am learning to not only accept help, but ask for it.
  • I will have an excuse to take time off from work and devote time to my books, reading, etc.
  • I'm feeling motivated to eat healthier.
  • While I'm undergoing chemo, I won't have to shave, wash my hair, or deal with periods. 
That's all I have for now, but it's a longer list than I thought I had when I started writing this post!

PS....Michael found this. what do you think?

Monday, June 29, 2015

Let's get on with it!

First off, the good news is that I have an appointment with the oncologist on Thursday morning. Finally, we can get moving! Basically, there are two doctors in this area who take the program I'm on, so I don't have a lot of choices. This one seems great, though.

At this point, I am generally in good spirits. I've read many success stories (don't stop--keep telling me!) and feel confident I'll beat this. I'm riding on a wave of love and support--I don't think I've ever felt so loved in my whole life. It's amazing.

But now the rush of emotions has died down, and I just want to get on with it already. Experience the hard parts to see if I really am that strong. Get past the surgery, the chemo, the radiation. Start the healing process. Feel better. Everyone's telling me how strong and brave I am, but the worst is yet to come and I have no idea how I'll handle it.

It's a little like when I did the marathon (crazy to think that was just a few months ago). There came this point, a calm between the hard part of training and the actual event. I was done training with the exception short runs to maintain my fitness, and I'd done all the blogging and my friends were hugely supportive. I had gone through the "this will be fun" phase and the "OMG this is so hard what the hell was I thinking" phase and the "OMG the marathon is only a few weeks away I can't do this" phase and had reached the "All right, I can do it let's just get it over with" stage. That's where I'm at. Let's just get it over with.

Physically, I tire very easily, I'm in pain, and I often feel slightly sick to my stomach. I am sleeping well, though, so there's that.

My darling Michael is home, and we'll start moving me in as time and energy allows. He bought me a book, "Let Me Get This Off My Chest..." by Margaret Lesh. A lighthearted view of her experience with the disease. I've started reading it and am enjoying it. Seems like a good read for anyone with cancer or even anyone who knows someone with cancer (like....you!). I'd recommend it based on the few chapters I've read.

Thank you for taking this journey with me, and keep those survival stories coming!

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.

Friday, June 26, 2015

How can you help?

Yesterday was quite a day! After publishing my initial post and putting it on facebook, I was flooded with comments, texts, calls, and private messages. I loved and appreciated every single one. Thank you. Thank you. Your love and support means more to me than you know. Your kind words very much lifted my spirits and moved me. The survival stories gave me hope. Knowing I'm not alone is comforting. Amazing.

Many of you said if there's anything you can do, to ask. It's difficult for me to even accept help, let alone ask for it (I hate to impose!), so I'll put it here and if you want to do any of these things, just let me know. It's easier for me if you ding me and say, "When are you available for lunch this week?" than to leave an open invitation.

My physical needs are mostly covered at this point. I have plenty of food and since I'll be moving in with Michael and his family, I'll be taken care of in that way. It's more the emotional needs:

  • Tell me survival stories. This is what I need the very most right now. Please refrain from telling me about your friend/relative/etc. who died from cancer. I don't need to hear it.
  • Make me laugh. This is number two...humor is my coping mechanism. Tell me jokes (including irreverent ones about cancer), funny stories, tease me, Although I am taking the danger and treatment very seriously, I am making as light of the situation as I can. 
  • Give me useful, substantiated information, resources, etc. "Things they don't tell you" survival tips are awesome. Please refrain from telling me things you really can't substantiate or aren't qualified to give.
  • Keep me accountable. Don't allow me to wallow in self pity or dominate every conversation with my tales of woe and "cancer, cancer, cancer!" Feel free to threaten to call the Wah-mbulance.
  • Take me out to lunch, a movie, to play games, and other fun distractions. I may not always feel up to going out, so I might counter with hanging out at home with you. Weekdays are the most important because I'll have Michael in the evenings and on weekends (plus teaching some dance lessons), but I'll accept invitations then too. Especially if he can come.
  • If you live far away or don't have time/inclination/whatever to get together in person, we can chat on facebook. Just don't be offended if I don't have time to answer right away.
  • When I really need to go ahead and cry it out, let me, give me a tissue and a bucket if I need to hurl, but then help me pull out of it. Remind me this is temporary. 
  • I might need rides to chemo/radiation/etc. appointments, if you're available weekdays during the week. I don't know when this will start or any other details.
That's all I can think of at the moment. If you have any other ideas, let me know!

I was asked in a comment on the last post to write about how the diagnosis came about (how I discovered it, etc) and I will absolutely do so. I'll also probably do some to capture those "things they don't tell you," resources, etc, as well as just share my feelings and progress. 

No doc appointment yet so I've been told to call on monday if they don't call me today. 

Thursday, June 25, 2015

It happened to me.

On Tuesday I was diagnosed with breast cancer. It has spread to at least one lymph node, in my armpit. Whether it's gone further than that, I do not yet know. More tests have to come back and I will meet with an oncologist in a week or two. You probably have a lot of questions, and I do, too. I can't answer most of them. I don't know what treatment I'll need. I don't know what my prognosis is. I don't know how I'll feel or how much I'll be able to work. I will keep this blog updated with my progress, so as soon as I know anything I'll try to post here.

Today, I'll share a few random thoughts. I might ramble a bit. This is a surreal experience, and weird thoughts pop into my head about all kinds of things. I'll share more in the days ahead.

It's so cliche it's almost humorous...but then, humor always has been my number one coping mechanism. But one of the things that keeps going through my mind is, "I can't believe this is happening to me. Cancer happens to other people, not me." Some other ones: "I'm only 42. How can I have cancer?" "How did I get this?" "What's that weird pain...is it the cancer?" "Will I die? What will that do to my family and friends?"

I have a wonderful support network. Amazing friends who truly care about me. They have been reaching out over the past couple days as they get the word. Thank you all...it means more to me than you know.

I will soon move in with my boyfriend, Michael. He is amazing and I will probably talk about him a lot. He has pledged to take care of me, no matter what.

I have not had health insurance for the past several years. Because of my diagnosis, they put me on Medi-Cal and everything will be covered.

During this time that I am fighting this, I'm going to be selfish and take care of myself I'm going to make sure I get the rest and care I need, both physically and emotionally. This means I will not allow any negativity in my life. I'm giving out fair warning: I will not tolerate negative talk about my prognosis/treatment, uninformed opinions of how I got this or how I should treat it, etc.

I will, however, happily welcome survival stories, "things they don't tell you" advice from those who have been through it (or advocated for someone who has), doctors, etc.

I am relatively young, very strong, and highly determined. I come from hardy German/Irish/Finnish stock. As my 75-year-old father who has never eaten a vegetable in his entire life and is ridiculously healthy and active told me, "You're my daughter. You'll be just fine." I believe him. I will fight this, I will win, and I will take you all on my journey with me.

Let's roll.