I Need a Hat

F-ing hair is starting to fall out. As I will not be wearing any stupid wig, Dear Friend and I have been doing some research on the right hat for me. So far we have come up with this, this, this and this. While I happen really, really like one of them, I don't think it would be welcome at work. Or, any public place for that matter. I remain open to suggestions.

'Tis the Season

I hate breast cancer awareness month. Mostly, because I am aware of breast cancer every single month and because I hate this particular promotion. But, then I have major kitchen issues anyway.

I am, however, hitting a few events this month. How can I not? One is a bash that is always fun and offers an intriguing swag bag. At least, there was that one year and that one item... The other is an educational conference focused entirely on the metastatic population. I'm looking forward to hearing what progress is being made in treatment options for metastatic women, and to catching up with and making new friends.

If you're interested, you can support the Young Survival Coalition here and the Metastatic Breast Cancer Network here. Go ahead; 'tis the season.

Thursday, October 18th

I am scheduled for gamma knife next Thursday. I have to be at the hospital in New York City at 6:00 a.m. Maybe I should go to the city Wednesday evening, hang out at the Bubble Lounge until closing and then go to the medical center afterward rather than try to get in from New Jersey on Thursday morning. But, what would I do from 2:00 a.m. to 6:00 a.m.?

This Weekend's Accomplishments

It was a very good weekend. I completed everything on my to-do list and even did something extra that I didn't anticipate. See if you can guess what it was.

• Sipped coffee on the sidelines of a dewy soccer field while watching The Kid work on his skills. The big happy grin on his face reflected in my own.
• Had a school/soccer friend of The Kid's over for the afternoon on Saturday and enjoyed watching the boys play football in our yard on a sunny, unseasonably warm fall day.
• Performed a minor makeover on our flower beds by yanking weeds out hand-over-fist to the tune of one ginormous heavy-duty garbage bag. My rose bushes are happy again, as are what was left of my peonies, which have been mercifully put out of their misery for the year.
• Enjoyed the company of friends we hadn't seen in two years. Our patio was the setting for burgers, dogs, wine, juice boxes, brownies and lots of catching up. The kids, who have known each other since they were six months old, took turns bombing down our driveway on one of the "grown-ups" long boards.
• Fulfilled the role of track support for My Love, who participated in a skill-honing advanced rider training program at Pocono Raceway on Sunday. My Love rode his/our bike to the track, while The Kid and I followed him in the car with his tools, lunch, camera, clothes and anything else he needed for the day.
• Went around the track faster than just about anyone else when I got on the back of professional rider's bike. Have you ever seen the world sideways from a motorcycle? I recommend it.
  

What Not to Ask

Upon learning about a cancer patient's disease progression, do not ask questions such as, "So, this is something that they'll just treat and it'll be fine, right?" Or, similarly, "But, did he/she say that this really isn't such a big deal?" Additionally, after a patient's consult with a specialist, do not ask questions such as, "So, this is going to do it, right?"

Why? Because you are asking the patient to assuage your fears. Not only can the patient not do that, they likely have no interest in doing so. They are having a hard enough time keeping their own fears in check. Managing yours is your problem.

I offer this helpful reminder: Stage IV breast cancer is disease that has left the primary site and has invaded other parts of the body. Current imaging techniques may not allow physicians to see all of those places, but in all likelihood, the disease is somewhere, even when scans come up clean.

So, I will be having gamma knife to provide local control to specific sites in my brain. Is it going to be fine? No, it's not.

I have to get a frame screwed to my head and keep it there for about five hours while they MRI my brain and then take the time they need to map the radiation. Further, during the MRI, which is going to be more finely sliced than my routine MRI, there is the possibility that they identify additional sites. Should those sites be numerous, they'll bag the whole gamma knife thing and start considering whole brain radiation which, just like it sounds, is when they radiate the entire brain.

But, let's not go there. Let's take the most positive scenario. After the scanning and mapping and waiting, I'll get my head screwed down to the treatment table so I am immobile while they shoot beams of radiation at my head.

But before then, I get to think about this for the next week or so while things get scheduled. Of course, ruminating on this will be even more fun while in transit to the medical center for the procedure in New York City metro traffic.

After this procedure is done, I will able to resume my standard I-have-incurable-cancer anxiety level. I will continue to need chemotherapy as it is the only tool I have to try to keep my disease at bay.

I am a hopeful, smart, spirted and determined person. I am not an ignorant person or worse, one who is in denial. I cannot make this situation better for anyone. Don't ask me to pretend.

Healthcare Management: My Other Job

There are multiple reasons the phrase "on a daily basis" is included in the sub-head of my blog title. Cancer isn't just with me every day because it is, well, with me every day. The f-ing disease (Yay! I've been dying for a good opportunity to use that term again for weeks!) demands daily attention on some level. Okay, so the brain met thing elevates activity above baseline administration. But, still. Here's what's happened this past week:

• Called Rad-Onc #1 as recommended by My Oncologist only to learn he doesn't accept my insurance.
• Researched gamma knife facilities in New Jersey. Found a place only a short 40 minutes from home. Spoke at length with a member of the staff to find out what is needed from me to get on the books and move things forward. Called My Oncologist to have said things faxed to the facility. Called to follow up to confirm receipt of fax and heard nothing for three days.
• Called My Oncologist again to get another recommendation for a gamma knife facility. Called Rad-Onc #2 and spoke at length with... see above. However, this time I got a call back within a day-and-half with an appointment for consult this Friday.
• Received call back from the New Jersey site after booking the consult with Rad-Onc #2. They had an appointment for me on Friday. Imagine the staff member's surprise when I told her that they didn't move quickly enough for me and I have moved on to a more responsive facility.
• Called hospital where scans were done to request disk of brain MRI to bring to Rad-Onc #2 for viewing at consult.
• Drove an hour-and-a-half to hospital during rush hour(s) to pick up disk of MRI images.
• Had STAT CBC drawn this morning before going into the office. I'm eager to take another step down on the steroid and My Healthcare Team is interested to know if my platelets are holding following infusion of Avastin last Friday.
• Having not heard from My Healthcare Team about the previously mentioned STAT CBC, I follow-up via phone this afternoon and find that they haven't received the results of my STAT CBC. My Healthcare Team says they will follow up with the hospital and get back to me.
• I missed a phone call from THE Head Nurse because I was in a meeting. She leaves a cryptic message saying I should call her back in the morning to talk about "what to do with the prednisone." On the up side, she didn't say, "Get your ass up here for a platelet infusion or more IV Ig."
• What? Isn't that enough?

An Introduction

This is my friend Dikla. She's amazing.