argggg and poop

Since my last post, I managed to get myself and my family onto a plane and to a place where I can spend a lot of time moping around and feeling sorry for myself, where it doesn't really show. When you are lying on the beach or by the pool, no one really knows if you are sleeping or just enjoying the UV light ( = future cancer), or mourning the fact that this might be the last time you ever appear in public in a swimsuit.

This time has been good for me, though. Emotionally, I feel like I am at a low point, and I don't think I've started coming up yet. But I am working my way along the bottom, moving forward. The water is shallow, not as deep as it once seemed. I know I can come up whenever I want to; it is simply a matter of putting my feet down and standing up. I am just not ready yet, and I think that's okay. There are some lovely things at the bottom, like nine-legged sea stars, and some really amazing doctors. 

Without a doubt, the fact that Dr. L was on vacation, and now I'm on vacation, has been a tricky part of this. As much as I wanted to take this trip, and as much as I'm thankful I was able to, I also think not being in town at a time when I really feel like I need to be seeing doctors has added a lot of angst to an already angst-filled situation. (Note to self: Next time, try not to get cancer in the middle of the freaking summer.) 

I'll be eternally grateful for the doctors that I did see, Dr. J and Dr. M, before I left town. I actually hand wrote a thank-you note to Dr. M before I left, telling him this. That discussion we had before I left town was certainly not what I wanted to hear, but has turned out to be priceless - preparing me for the reality of my situation, and helping me understand where I need to get to mentally. 

And then there is my beloved Dr. L, who never disappoints. Her NP had told me she would have her call me when she got back into town, so I could at least talk to her on the phone ASAP. Just to make sure she didn't forget, I sent a message via the patient portal on Monday, which is when I thought Dr. L was getting back.

6/29/2015 8:12 AM

Subject: Non-Urgent Medical Question ( = the default on the patient portal)

Dr. L,

I hope you had a nice vacation. NP called me last week to tell me the results of the pathology report. I am very surprised and upset by this. I do have an appointment with you July 22nd that [the nurse navigator] set up for me, but that just seems like such a long time to wait as I am trying to figure out how to proceed and work toward accepting it. I am hoping that I can talk to you, by phone or e-mail, before 7/22. Is this possible?

Thank you,

Waning

While Dr. L is super good at getting back to me by e-mail, she almost always calls me first, so I was sort of surprised when I got such a quick response, with no phone call. 

6/29/2015 8:46 AM 

Subject: RE: Non-Urgent Medical Question

Hi Waning, 

It's NP. (I check all of Dr. L's messages while she is out). I will leave this message in her box until she gets back this week (July 1st). I also have left her a message after our conversation last week that you will be out of town but available by cell phone to talk. Hang in there!! I know all of this news is disappointing. Please let me know if there is anything else I can do to help. 

NP 

So of course, on July 1st, I kept my phone near me all morning, hoping I might seem pathetic enough for Dr. L to call me right away. After all, I'm sure that after 10 days of vacation, I am the only patient who was anxious to hear from her. LOL. And... she did call, but... somehow I managed to miss it. In retrospect, this might have been a good thing because I don't do well on the phone. Face-to-face is my preference, but after that it is e-mail. Plus, when she called, I was surrounded by people, which is never a good situation for a Cancer Conversation. 

I wasn't able to check my e-mail until the afternoon, and of course, Dr. L had followed up her phone call with an e-mail.

7/1/2015 11:09 AM

Subject: argggg (LOL - love this; it's something I would use as a subject line for a friend, but not a patient (if I were a doctor, that is).)

Hi Waning, I reviewed your pathology and it looks like at least 3 of the margins were either positive or too close. I agree with Dr. J that you will have a better result in the long run with a mastectomy. We should be able to give you a very nice result with reconstruction. When do you get back in town? I can certainly have Joanna get you in sooner to discuss.  

Jane

(You know it's bad when you are suddenly on a first-name basis with your surgical oncologist.)

I replied:

7/1/2015 2:39 PM

Subject: RE: argggg

Thank you for getting back to me so quickly. This is such a drag. I am back in town July 11th and can come in any day that week except for the 15th.

She replied:

7/1/2015 2:59 PM

Subject: RE: argggg

I know, poop! (Haha, yes, she actually wrote that. POOP. Seriously! That's what this is.) I will forward your message to Joanna and she'll get you a sooner appt.

Jane

Then, I ended up writing a middle-of-the night angsty e-mail that just so she would understand how needy I am going to be when I see her next time. I really don't think I was expecting a response; I just need to get it out, and at this point, I don't care if people know I am crazy. It's called rock bottom. 

This pretty much sums up how I feel.

7/1/2015 10:15 PM

Subject: RE: argggg

Thank you, I did get an earlier appointment and that really helps. I am just really freaked out about everything at this point. Going to the doctor freaks me out. (I think I've seen more doctors in the past two months than the rest of my life combined.) Surgery freaks me out. (It took me 17 years to try to have my hip fixed, and I only did it because I couldn't really walk anymore.) Plastic surgeons REALLY freak me out. I don't have tattoos or dye my hair or even really wear make-up, so the idea of having something implanted into me freaks me out. I am freaked out I will feel resentful of having a fake boob every day for the rest of my life. But I am also freaked out by the thought of trying to go swimming if I don't do reconstruction (and I like swimming :( ). I'm freaked out about adding more negativity to my already questionable personality. But, I'll consider this my farewell to swimsuits vacation, and try not to think about it too much until the 16th. Thanks again for your help.

(For the record, this was the absolute maximum number of characters I was allowed to type.)

This morning, I was surprised to receive this very sweet response.

7/2/2015 9:09 AM

Subject: RE: argggg

You poor thing! I know how hard this is, but we will get you through this. To say this is life changing sounds somewhat trite, but I think if you can really focus on being as positive as possible, this will be easier. It's hard knowing you will never be "normal" again, but you will get used to your new normal. I have every confidence that you will be cured and live a happy, fun life! I think the reconstruction thing is very important for some people and not at all important for others. Most people prefer to do it at the time of the mastectomy, a few choose to do delayed and some never do. There are prosthesis for swimming as well. Would it help to go look at what's available? We use a store called "[For the Boobless]" for our prosthesis. They would be more than happy to see you and show you some things.

Would you like us to refer you to speak with a social worker or counselor?  We also have some support groups available.

Please let me know how we can help.

Jane

Again, this is new territory. Do I need help? I don't know. I have no idea what I need. Did my e-mail make me sound like a woman in need of a social worker or counselor? Yikes. How humiliating.

As soon as I got a chance, I shot off a quick reply.

7/2/2015 6:16 PM

Subject: RE: argggg

Dr. L,

Thank you so much for your message. I do not think I need anything right now except a little more time. As a science-y person, I am okay with things that are predictable, even if they aren't good. I felt very positive even after the 2nd surgery but just didn't see this coming at all. But you are right - I will get through this. I have to. 

I thank you from the bottom of my heart for the amazing care that you've provided for me. 

Waning

And that, friends, is where things are right now. Despite this early-stage cancer, I need to have a mastectomy. To be honest, I am having a much harder time with this than I thought I would. Of course, I honestly never thought I would be here in the first place, so I never spent a lot of time thinking about it. OTOH, I have spent some time contemplating the enormity of a mastectomy, mostly gloating that I didn't need one. (The fates are a fucking bitch, no?)

As Dr. L said, this is life-changing, as trite as it may sound. I have such a good life, I don't want it to be changed. But the reality is that it will change, and I guess it is up to me, as I try to surface from rock bottom, how this is going to change my life.