Dear ANN SILBERMAN,

I love my insurance company. I have no complaints about them. They have approved every test, every treatment, and every single thing I've wanted to do about my cancer, even when it isn't a normal treatment, like liver resection. I have not gotten any big bills or any surprises. Referrals and authorizations happen within a day or two and birds sing and bees buzz when they are around. I highly recommend them to anybody who has a terminal illness.

But, they keep sending me these letters.

Dear ANN SILBERMAN,

Keeping track of healthcare needs can be challenging for all of us. We are here to help. If you are due for care, please schedule a visit with your doctor. You are due for:

Colorectal Screening: Rates of colon cancer are decreasing because screening can find pre-cancer and treat it before cancer ever develops.

Cervical Cancer Screening: It's time! The American Cancer Society recommends a PAP test every 1-3 years based on your medical history. Please make an appointment with your PCP or OB/GYN for your Pap test.

Sincerely,

Your Health Care Team

I get these letters every other month or so, and I throw them in the round file, ignored.

Maybe you don't know this, but once you have cancer that has metastasized to another organ, you don't really need screenings to go looking for cancer anymore. You've already found a sufficient amount.

Based on my medical history, I've kind of moved past screening mode and gone straight into treatment mode. I have regular CTs of my insides, which will show anything going on, so taking a few cells off my cervix in a cancer hunt seems pretty old school at this point.

Yes, one of the beauties of Stage IV breast cancer is you never have to have a screening colonoscopy. Honestly, that's one of the first things I thought when I found out my cancer had metastasized. "I guess I won't have to do the 50 year old colonoscopy thing now, thank God."

That's how badly I don't want a camera up my butt.

As far as keeping track of healthcare needs, I think I am managing just fine, thank you very much. Last week alone I had an appointment at Nuclear for a MUGA, then two days later at my oncologist's office for a Zometa drip, and then yesterday I had one at Radiology for a chest/abdomen/pelvic CT. That, my friends, is three appointments in one week, none of which I missed or was even late for.

That doesn't even include several phone conversations trying to reach the infectious disease guy, which were unsuccessful. I am, apparently, only allowed to speak to him through his very unpleasant secretary. I am going to have to find a different doctor to treat C-diff, maybe get a referral to a GI doc. Which, will happen fast with my insurance, and who will not be allowed to put a tube up my butt.

In any event, I am the Queen of keeping track of my healthcare needs, and don't need a letter to help me with the challenge.

Next week is my down week; one appointment only. I see my oncologist on Wednesday.

But, it's a biggie - I get the results of Friday's CT.

For the first time, I don't want to hear what it says, good or bad.

Maybe once in a while my healthcare needs include denial.

.

Hard Luck Hannah

At my last appointment with my oncologist we went through the usual routine: he checked my blood, asked me questions about how I felt, how much I'd recovered from C-Diff and typed all my responses into the computer. He told me because I still had stomach pain he couldn't give me chemo. I mentioned, off-handedly (ha ha!) that I was now getting frozen shoulder on my left side, and he said that I can't let that happen. (Okay shoulder, cut it out.)

At one point, out of the blue, he said sympathetically, "You are a bit of a hard luck Hannah."

My ears perked up at that. "Hard Luck Hannah?" I knew what he meant, but where did that phrase come from? What year was it from? Where had I heard it before? Who was Hannah?

I pictured a 1920s flapper woman with marcelled hair, silently kicking and screaming as a mustachioed bad guy ties her with a thick rope and puts her, helpless, on a black and white railroad track. Or, maybe Hannah was a cartoon character with spiky black hair; a plucky young girl on her own with no family - one who finds it easy to make friends with millionaires. Or, could Hannah be in a song, and who would have sung it? Kurt Cobain? Tony Bennett? Glen Campbell? Maybe Hard Luck Hannah was a swing song by Benny Goodman and recreated by Big Bad Voodoo Daddy?

I completely lost track of the appointment and the doctor, lost in my Hannah reverie. It was all I could do not to pull my iPhone out right there and search for 'Hard Luck Hannah Derivation.'

But wait.

It's probably not good when your oncologist calls you a Hard Luck Hannah, right?

It definitely has different connotations with each specialty. If your Internist calls you a Hard Luck Hannah, he could be referring to anything from your penchant for tripping on the stairwell to your tendency to get colds. When it's your psychiatrist, he might say something like that in sly disbelief, like you are pretending that all these bugs are crawling on your skin. But, when it's your oncologist? I shudder to think what it could mean for the future if Hannah doesn't get off my back.

Frankly, I really hadn't considered myself a hard luck case before. In fact, I thought I'd had it kind of easy and been kind of lucky. Yes, you heard that right, I've considered myself lucky - if you keep that in context.

Sure, as a Stage II I had to have a mastectomy and do six rounds of chemo and a year of herceptin, but I hadn't found the chemo to be that difficult. Yeah, my cancer had metastasized, but only to one organ, and I was lucky enough to be able to get a rare and groundbreaking surgery to try and fix it and maybe get some extra years. True, I got one of the worst cases of C-Diff the infectious disease specialist had ever seen, but hadn't I lived through it and AND kept my colon?

What hard luck?

I suppose some folks think getting cancer in the first place might be hard luck but I just kind of think of it as life.

I haven't been thinking of myself as Hard Luck Hannah and am not so sure about it being my new diagnosis. I can't say I've been thinking of myself as Good Luck Gertie either, but I did think other people in my same situation may not have been as lucky as me.

I guess it's all in your perspective. I think I'll continue to believe I'm on the good side of a bad situation.

Anyway, my searches came up with nothing (except that Hannah seems to be a popular name for dogs) and I still don't know the derivation of the phrase. Not being able to find all the information my ADD head requires IS bad luck. So, if anybody knows for sure where the phrase Hard Luck Hannah come from - please share!

Video - Top 3 Tips for Getting Through Chemo

I was contacted by a company, Breast Cancer Answers, to do a video on my three best tips for getting through cancer. Before I agreed, I checked out their website to be sure this would be of value, and I found they have a ton of usable information, especially for those who are newly diagnosed. There is nothing like hearing what works from somebody who has "been there, done that."

They have lots of other video tips from women who have been in treatment, as well as Q&A from Dr. Jay Harness, who is past-President of American Society of Breast Surgeons. Not only does he have a Questions and Answers section - but if you find you have a question that is not already there, you can ask it yourself. How cool is it that you can ask a question from a real doctor, one who doesn't have 30 patients waiting behind you, and get a response!

They also offer a checklist of 15 questions to take with you to your first doctor visit after diagnosis, which is always valuable during those frightening, early days. The questions are usable whether you'll be seeing an an oncologist or breast surgeon. These are questions that you do need to know and at the early stage of shock and probably not knowing much about breast cancer, may not even know to ask. I didn't.

Now, before watching the video, keep in mind, I had to do all this talking using my chemo-damaged brain in one Skype session with no notes, so be nice as I stutter through my thoughts!

Here are my 3 top tips for getting through your rounds of chemo. These tips are good no matter what your Stage is. After you watch this, check out that site and watch some videos, you'll find it valuable.

RIP Blogging Friend

Rachel Moro, of the Cancer Culture Chronicles, passed away February 6th. She was a frequent commenter here, and we kept in touch via email, having mostly the same positions on breast cancer advocacy. I can't tell you how hard it is to hear that she is gone. We all know this moment will come, we women with metastatic cancer, but it doesn't make it easy.

RIP Rachel

Keep Calm....

I have been struggling these past few weeks. I was supposed to go back to work in early December, but the c-diff infection made that impossible. Since then, I've been doing my best to get well. I've gained some weight, started feeling better, moving more.

Then, I had a little relapse of c-diff, which set me back. I caught it early, and I didn't get dangerously sick like last time, but I'm back on vancomycin. It's disappointing because once you have a relapse of C-Diff you are very likely to have another and another and another. But I'm trying to learn not to think about scary things that haven't happened yet.

Along with physical struggles have come the mental. I've labored with the tough decision of whether to return to work. As you all know, I enjoy my job and the people I work with, and I especially love being around high school-age kids. I have been very eager to go back, having been off much longer than expected. But, I'm physically not up to it yet.

And then I got a letter: time has run out. As of the 17th, I have to go back or take a year-long leave of absence, with no guarantee that I can return to the same job at the same school.

Realistically, I am not well enough to work full-time, but I've come a long, long way. Two months ago, I was unable to walk, or eat, was bloated, in danger of a colon rupture and just very, very sick. Now I can go to the store, run errands, cook meals, pick up the house. I'm slow, not swift like I used to be, but I'm functioning.

I'm not strong enough to work a full day right now: morning pain, fatigue, and stomach problems are an issue - but what if I can in two months?

It's hard to think about giving up a job when maybe soon I'll be back to normal, or closer to it. My improvement over the past two months has been gradual but definite. Where will I be in two more months?

Unfortunately, it's decision time. What is best for me? What is best for the school? It's a choice I knew would come, and I've been wrestling with for some time. I sadly concluded that based on this moment in time, I would have to go out on SSI disability and give up the job I find satisfying and enjoyable, and let them be free to hire somebody healthy and dependable. That is difficult mid-year but certainly not impossible. I was pretty sad at this idea but I have to think of the school.

Cancer was taking my life in ways I had not expected, earlier than I was ready. But that's what cancer does.

So, I was in my oncologist's office, and after my visit with the doctor, I discussed the disability paperwork with the secretary. I walked out into the front office, where I saw two kids from my school, a girl and a boy - the girl an office TA. I did a triple-take.

Why were kids in the oncologist's office? MY oncologist's office? MY kids? I about decided I was imagining things, when the girl said, "Hi Ann." I said hi back and we chatted for a while. (They were there to accompany a friend who was with a sick relative).

The male student had once come in to my office and picked up a paperweight. It's designed with the British WWII slogan, "Keep Calm and Carry On." This kid got into the routine of pointing at me and saying, every time he walked past my office, "Keep Calm!" and I would smile and and say back, "Carry on!" Silly, but the kind of conversation that makes it fun working with kids.

The coincidence of these kids, from my school, being in my cancer doctor's office at the very minute I'd decided to give up my job could not be ignored. I had been ambivalent, and this cleared things up for me.

I wanted to go back, and I needed to figure out how that could happen.

I came up with a plan.

First, I met with my substitute (a wonderful lady who has taken over for me and learned a hard job quickly) and explained to her that I wanted to try to come back, but could only work half days. A substitute is only allowed to work a certain number of hours per year, and she would not be able to stay full-time much longer either. To make sure the school would run smoothly, since she knew the job - would she stay mornings through June, and I would come in afternoons? She agreed. Details worked out, I took this idea to my Principal, who kindly agreed to this arrangement as well. I then contacted HR, not knowing the rules and expecting that might be the stopping point. But, they also agreed.

Whatever you might be hearing in the news about schools, all I have to say is none of it is my experience. It's truly a people business and everybody from upper administration on down does care about employees and especially about kids.

So, I'm going back February 17th (yes, that's a Friday). I am going back to work from 11:30 to 3:30. My hope is that being somewhere every day, at the same time, will help facilitate the rest of my recovery, and I'll soon be stronger and back to working full-time.

When you are home sick, you tend to fall into the habit of napping when you want, eating when you want, resting a lot. There is no structure. While that is assuredly good for you when you are critically ill, as I was, at some point - my theory is, at least - your recovery stops with rest alone. Getting out to work half days should help me get in a routine, used to getting up at the same time, going to bed at the same time, eating regularly, etc. It should, I hope, help me get physically stronger. Mentally, I know it'll be good for me to have something to think about aside my health and immediate family.

My assumption is my recovery will continue and down the road - a month, two months - I will be able to work full-time again. I've come so far, I should only get stronger.

And, if by summer, I am still not able to work a full day, if my body won't tolerate it, then I'll have given it a try. I can leave in the summer when they have time to hire somebody right for the job and I can help train her, and not leave during the chaos of a school year. But, my goal, now set, is to be back to work full-time before then.

My next goal is to get over this c-diff permanently, so I can get back on chemo.

So, thanks kids. Because of you, I'm going to Carry On.