Life's Journey

Yesterday was chemo day. I have a love hate relationship with these days. Obviously I hate the getting poisoned part - probably goes without saying. But, I love my family at the oncology office. This may sound strange, but my medical team has become an extension of my family to me. It's actually more than that, they are a new family for me. I've talked about many of my nurses before but it's been awhile. Michele is my super-nurse, my other mom. She's my oncologists nurse practitioner and she's amazeballs. I don't know what I would do without her holding my hand throughout this process. She is someone I can call, text, or talk to about anything and everything. She always understands and if she doesn't have the answers right away she will find them. She is my caretaker, my nurse, my friend, and my family. We have been known to get together outside of the medical setting just as friends and I love her for that. She truly cares. And this, I feel, is a double edge sword. I mean, there's no way she could do this job if she got so attached to each of her patients. It's emotionally just too hard. But, I am grateful that we have made this kind of connection so I have someone at my side that I can talk to about absolutely anything easily and be completely open with her. There are two other nurses that take care of me on chemo days, Anna and Andrea. These girls have also become more than just nurses to me, they are friends. They genuinely care about how I'm feeling, what I've been up to, and managing my treatment plan. They often know how I feel before they even ask. They give me hugs and hold my hand whenever I need it. This team of professionals are my lifeline. I don't know how I would get through all of this without all their support - on so many levels.

But, it's more than just the nurses. It's the doctors, the front desk staff, the patient advocates, the nurse assistants. There are so many people that make such a difference in how my treatment day will go. The staff at the front desk know my story and know me by name. They are always very helpful and kind. They genuinely want to know how I'm doing. This makes a big difference and helps me feel a little stronger knowing that they are also in my corner cheering me on. There is a financial/insurance specialist, Marisa, who has really helped me navigate the extreme costs of treatment. She helps me work with the insurance, she attempts to get me financial aid, and also cheers me on.

It's even more than just the staff at my amazing oncology office, it's the other patients. I've learned from my friends that the thought of going into a chemo infusion room cares the shit out of people. Of course this is completely understandable but I thought I'd try to give you all a little insight into how this all really goes down. It's only scary if you make it scary. I have chosen to make it as fun as I can. I mean I get to see all my friends for the day so that's a good start. Let me start by describing the room. The chemo infusion room is full of windows and lots of light - it's not a dark scary room where everyone is curtained off into their own little bubbles. The room has a big wrap around desk at the front where the nurses work. There is a half wall that separates the room into two areas. Each area has about a dozen reclining chairs for the patients and plenty of extra chairs for visitors. There are lots of IV stands, blankets, pillows, books, magazines, movies, puzzles, etc. The chairs are set up in a horseshoe shape on each side of the half wall. This allows for patients to chat with each other and more of an open community type of feel. You cannot drive yourself to or from chemo so having a chemo buddy is essential and most people have someone with them that stays around durig treatment. My mom is my primary chemo buddy, she comes with me most weeks. But, sometimes I've had friends bring me instead for a change of pace. For me, this is time to just sit with no distractions and catch up with whoever I'm with. Sometimes we play games on the iPad or cards. Sometimes we just talk and the day flys by. But, I will say that each patient is different. There was one woman I met who would drive up from Tucson (about 2.5 hrs away) for treatment. She would make this a girls trip with 3 of her girlfriends. They would drive up together do some fun stuff together, stay the night in town and come to chemo the next day together. They were a fun group. I'm happy to say that last I heard she was done with chemo and currently in remission. I've met women of all ages at chemo. I can always spot the women who have crawled into the deep dark whole of cancer and stayed there. This is easy to do. Cancer can definitely bring you down - the key is accepting it and fighting and doing the best that you can with what you've got. I've been in the deep dark hole of cancer and it's scary there. But I'm not going to lie, there are still times when I get sucked into this hole and have to keep climbing back out… it's always a battle. But, I feel for the women that I see that have chosen to live in the hole by themselves. They come to treatment alone, they cover themselves in a blanket and just keep to themselves. I just want to hug them and tell them it's going to be ok. But, it's a tough one because as a cancer patient I know it's not going to be ok. So the best I can do is try to help them when I can, give them a smile, sometimes it's even just a simple hello that can make a difference. There are no easy answers when it comes to cancer. But, I have made a number of friends in chemo. We all generally talk to each other and sometimes we share our side effects what works and what doesn't and other tricks of the trade.

So, chemo days aren't scary days - at least they don't have to be. The goal is to make the most out of a really bad situation. The nursing team, the office staff, and the patients all play a part in trying to make this bad situation a good experience. I guess the question this leads to is what happens next.

Today is the day after chemo and while I don't feel like a rock star I'm not at the bottom of the barrel. The "chemo hangover" usually doesn't truly set in for a couple days. When they give me the chemo they also give me IV steroids to help prevent a reaction. The steroids keep me pumped for a couple days which fights off the hangover. But once those steroids wear off the chemo hits me like a brick to the head. For now, I'm in slow motion, tired, and just not feeling my best. Still manageable though. My goal today is to try to prepare the "nest" for the next week when I do feel like I’m at the bottom of the barrel. I clean a little, fill the fridge, prep meals, and pull together some projects I can work on while I feel crappy. I've been trying to get back to my art so I will put together little packets of art projects that I can pull out and sit in "big red" (this is the big red recliner chair that came with Roy - it's really his chair and he can almost always be found in it, but while he's at work and I feel crappy it's all mine!) and just focus on a project and try not to think about how ucky I feel. Sometimes this works and sometimes it doesn't but I'm glad to have them readily available. Its little things like this that can really make a difference. Having the house a little cleaner and knowing that I don't have to worry about food eases my mind. The little projects help me find a quick distraction.

This is just a little insight into my world. It's definitely changed since I've gone on disability. I still miss work from time to time, but I know that walking away was the best thing I could do not just for me but for the company as well. I had to let go of the stress of the corporate environment and focus on me. Not an easy decision and a try acknowledgement of what is really happening, but it is what it is and this is all a part of acceptance. Like I said, it's easy to go to the dark corners that cancer creates and it's constantly a battle to climb out of the dark. But, I realize that I will never survive in the dark - I need the sunshine, my friends, my family… my life. I'm alive now and so grateful for the day - I don't want to take it for granted!

Sending hugs & smiles

Sarah