So here's part II from yesterday's post, in which I said I'd explain further about the kind of treatment that I'll be entering into post-wedding. But the truth is, I'm just not up to describing the meeting in great detail. What I will say is that we definitely know I will need an aggressive form of chemo since the left breast tumor is a single largish (3.2 cm) mass that is grade 3 (more quick growing/aggressive type of cancer replication), and I'm Stage 2A. The chemo they will give me is so aggressive that I will need to go through a heart test, a MUGA test, to determine whether my heart functioning is strong enough to tolerate a certain chemo they would like to give me. They are fairly certain my hair will fall out. I will need to be driven to my chemo appointments (because I won't feel up to driving myself home and/or will have too many drugs in my system to be safe to drive home). They will put a port under my skin for the chemo treatments (click on this link to learn more about what this is). More than likely, I will become weak and fatigued after the first 2 weeks of treatment, going through periods of nausea (which they will try to control with more medication), and I will need to avoid being around crowds of people, esp. people who may be sick (so teaching college students is not an ideal group to be around after your white blood cells start to plummet). Treatment will last 6 months.
There's much more to say...part of the details can't be worked out until the results of the genetic testing comes back late next week (May 7) and until I talk to the surgeon about the various options in front of me. I won't have a firm plan in place for another 2 weeks because there are many moving parts and because I'm in a gray zone, there are decisions I'm going to have to make myself without clear black and white guidance from the team of docs.
So this post is actually about my emotional/mental state, but, more importantly, it's about what I'm going to need (and what Matthew will need) in the next few weeks and months, and how those of you who have made gestures and offers of help can help. This will be long, so please only read if you are serious about wanting to know how I'm doing and serious about what you can really do.
WHERE I'M AT:
I'm sad. This is all overwhelming and I've been trying to really get a big picture view of everything, and yesterday was my first glimpse into the long-term big picture view. And in the short run, it's grim. In the long run, I'm hopeful. But getting to that point requires lots of painful and spirit crushing stuff. I'm also angry--angry is still there, but we'll get to that later. Maybe I'll stop being sad in an hour or two or a day or two. But right now, the weight of what this all means has hit me, and I'm sad. However, me being me, I'm also still in work-mode, meaning I have a list of things to do and people to contact to get things in place for when chemo starts.
WHAT I NEED:
Understanding, support, and real material help. I need people to know that I'm ready to face this head on, to do the research and talk to the people I need to in terms that are not sugar coated. But I also need to do this at my own pace and according to my own mood. And my moods are going to change day to day (maybe even hour to hour). There will be times when I call you or you see me and I will want to and need to process what is going on with my cancer and treatment. There will also be times in which I will absolutely NOT want to talk about what is going on and I will want us to just have a conversation in which we never say those "C" words (cancer, chemotherapy). I need people to meet me where I'm at whenever possible. I'm not shy about telling people how I'm doing. I'm direct and upfront about what I'm going through. I need people to understand this--you can ask me very directly: do you want to talk about your cancer (and please everyone, you can say cancer or breast cancer--we don't have to use coded language--please don't--I believe in using the real words for the real things that are happening to me right now). If I want to talk about it, I'll tell you. If I don't, I will say that as well. I need people to be able to be real with me--to not pretend that this is not happening to me. But also not to treat me like a victim or that I'm on death's doorstep. Yes, I have cancer, but I'm still me--something that anyone who knows me at all will discern from this blog.
HOW YOU CAN HELP:
[Are you ready? Here's the list]
*Only offer what you really mean. I've been blessed with so many generous and kind and loving family and friends, and every single one of you has the best intentions in the world. You also have complex and busy lives in which you are grappling with infants and toddlers, and kids. With department politics and tenure files and publishing. With your spouse and partner. With your book manuscript and workplace dynamics. With your own illnesses or grief and mourning.
I am going to take you at your word--I will believe you when you say I can call you and ask for something, anything. So please be clear with me if you can't do something. I will not think any less of you. I will respect that you are busy or that you can't handle being in a hospital. So please only offer what you are ready to give.
*Do not tell me how to feel (and probably best not to tell me what to do). I've NEVER done well with people telling me how to feel or what to do. I would NOT make a good soldier. I know folks are very well intentioned, but I HATE being told to "Keep positive!" or "Think happy thoughts!" or "Negativity will only increase the cancer." There is nothing POSITIVE about chemo except that it may increase my chances of survival. I am not HAPPY thinking that I am going to lose my hair, my appetite, and my ability to function at my normal level of activity. And if negativity really increases the spread of cancer, well, I guess I'm fucked because I think negatively from time to time AS MOST SELF AWARE HUMAN BEINGS DO. [Ok, here's where I am clearly still grappling with anger issues].
I'm actually a glass half-full kind of gal. I don't try to look for the silver lining, but if it's there, why not acknowledge it. And why bemoan what you can't change. On the other hand, all of this is FUCKED UP (and yes, I swear a lot when I'm upset and damn it, I am upset). So I think that my acknowledgement of what I am feeling--of all my emotions as good or bad or ugly or seemingly inappropriate as it may be to you--is a way for me to handle what is going on and to be real. And I need to be real.
By the way, for anyone who has told me to stay positive or any other things of an advice nature or motivational speech kind of saying, I'm not trying to make you feel bad or to say that I don't feel the underlying good intentions behind your words. I just need you to be able to meet me where I'm at. So please, no more telling me how and what I should feel or what I should do--thank you, but it's not for me.
*Use your internal filter when sharing certain stories with me. It is totally natural for people to share all their anecdotes and stories about either their own experiences with cancer or the stories of loved ones and friends. Some of it has been very helpful and inspirational (I was on the phone with my Aunt Joyce for an hour last night--she is a 2x breast cancer survivor and has been in remission for well over a decade--she is someone who I would gladly model my life on, not just in terms of the cancer but in terms of the kind of person and human being she is because she's tremendous]. But other stories aren't going to be as useful (the ones about misdiagnosis and surgical mishaps and cancer recurrence? Probably not what I need right now). If you've got a story that you think could help me get through this period--bring it on! But if you know of a friend who died of stage 2 breast cancer...hold on to that one.
*I will need to be driven to my chemo appointments. Yesterday I did ask one of the 3 people who are part of my "oncology team" about whether I could drive myself to chemo. This is when she told me that the treatments would be more aggressive/hard than colon cancer but less than leukemia (where you are put in a clean room and stay in the hospital). Since I currently have relatives going through both colon and leukemia treatment, this was a barometer I understand but that made me feel depressed. Anyway, I will apparently need to be driven to and from my appointments. When I asked if I can take the bus (because the CW stop is right across the street from our house) Beth smacked both her hands into her face, shaking her head and the doc said (having figured out my personality at this point), "Well, I can see that you are the kind of person who is going to do whatever you want to do, but I can tell you that you are NOT going to feel up for taking the bus after a round of chemo." So I guess the bus option is out (plus there's the germ factor to avoid), so I'll be needing a ride there about once every 2 weeks. The treatment lasts a few hours, so better bring a book or laptop.
*I need you to avoid me if you are sick. Especially as my treatment progresses, my white blood cell count will get lower, so if you have young children or your partner is sick or you are teaching with a room full of kids who may have the flu, probably best for you not to come near me in the fall. I apologize in advance to all my friends with cute babies for all the offers of babysitting I made--you can take a raincheck from me, but it probably will all need to wait a year. I'm trying to figure out the teaching piece in all of this (sigh) but you don't have to hear about that from me now.
*Please check in with me and don't be offended if I don't return your phone call or email. I know some folks may be wanting to give me my distance and space. I appreciate that. But I don't want to be the one to have to constantly reach out to folks and share what's going on. If you are interested, please read this blog and please do drop an email from time to time. Like once a month or once a week. That's fine. The cards and flowers and food gifts and email messages and voice mail messages and phone calls and visits have all MEANT THE WORLD TO ME. They have given me real strength and have meant more to me than I have words to convey. I would love it if people could continue to do this. I will need more support of this kind--the emotional and friendly and community type--as the chemo treatments wear me down. It doesn't have to be a long message or email. Just something that says you are thinking of me and wanting to say hi is great.
*Please think about Matthew. Matthew has been my rock. He truly lives up to his eagle scout award and boy scout image. He has been absolutely incredible during all of this. But it's affecting him too. And he's going to need support. I'm not trying to worry too much about him or to play the role of his caretaker in all of this, but I know some of you have asked me how he's doing, and he's doing great, but it's also hard on him--very hard. And he will need to figure out what he needs and wants on his own time. But I just want people to remember that Matthew is my life partner in all senses of the word. And to support me is to also support him.
*Bruno is going to need to be walked. We'll need some volunteer dog walkers (or I'll need to hire a dog walker) so if you have a soft spot in your heart for our dear dog, please consider a half hour dog walking stretch at some point in the next few months.
And on that note, I'll leave you with a photo of the little guy taken at Ocracoke earlier this week: