The Disease that Keeps on Taking

This is my friend, Dee, whom I met in the UK this summer. She was our Queen Sweep who, from her perch atop her Buell, safely kept the entire lot of us together as we cruised through Scotland and England. She loved bopping around on that little thing, with her stuffed Eeyore strapped onto the back. Serene and easy to be around. That's Dee.

This is my friend, Dona, a woman with a steely will more powerful than a Mack truck. Dona takes no prisoners when it comes to fighting her disease. She appeared in the Beautiful Eight video with me and she has two gorgeous little boys.

Both Dee and Dona are doing very poorly.

Do you think that the universe hears your thoughts and can pass on strength and feelings of peace to those who need it? If so, may I request your good thoughts for Dee and Dona?

Suddenly, It All Makes Sense

I woke up with a crushing headache at 2:30 a.m. and promptly threw some high-quality pharmaceuticals at it. One of the benefits of being chronically ill is having a rather well-stocked medicine cabinet. My assault was apparently lacking because by the time I was supposed to get up for work, my head was immovable. More pharmaceuticals and by 10:00 a.m., I feel up to getting out of bed.

I manage to get myself showered, fed and off to work. But, I have this thick fog around me. I feel hazy and trying to focus my thoughts makes me want to put my head down and sleep. If I direct my thoughts down one path, I inevitably end up veering helplessly off and tumbling down onto another before I realize it. Suddenly, I'm lost and need to clamber back up to my original thought. It's work. And, sometimes embarrassing.

I also feel a bit like I could be getting a touch of the flu. A bit achy and rundown. Yeah, the weather is dreary and cool. But, really. What's my deal?

Ah, yes. I've begun chemo again. So quickly I forgot how poorly you make me feel old friend. How did that happen? Never you mind. Just go ahead and do your work. I know you can't help what you are. I'll try and figure out how I am going to put up with you again. No hard feelings. Just some pretty miserable ones.

The Gamma Knife Update

My Love and I left the house at 4:30 a.m. on Thursday to drive into NYC for my Gamma Knife treatment. My Mom was at home to take care of The Kid and see him off to school. The whole affair went off quite smoothly from admission through discharge. But, I may not be the right person to ask as I was under the influence of Fentanyl and Ativan. I couldn't have cared less what happened that day.

The entire radiation procedure took approximately 20 minutes (so I recall being told) and the "other site" that showed up on scan is still unidentifiable and apparently smaller. So, it was left alone to die a miserable death by upcoming Avastin infusions.

For the rest of the weekend, I did generally nothing. My Mom really helped out with meals and entertaining The Kid. It was great to have her there. Especially since I was having math issues and couldn't figure out just how many of which pill I was supposed to be taking at what time. I'm chalking it up to transient, post-treatment issues. Although, I did do laundry. I'm always doing laundry and there is very little math involved in that. Except addition. Finally, there was The Kid's soccer game on Sunday. Another beautiful, but un-fall-like day. Cripes, that was a paragraph of nonsense, wasn't it?

As an aside, I wonder if they sell these by the pound. I could get a good deal and it seems a lot easier than drawing them on every day.

The Fully-Follicled Can Have Such Cold Hearts

I told My Love that my hair was quickly fleeing my head and that I needed an appropriate hat but soon. His response? "I'm sure you can find something laying around the house."

It doesn't end there.

I told The Kid that my hair was falling out and showed him some evidence. His response? He rolled his eyes. Oh, yeah. Rolled his eyes. It is only his cuteness that assures his continued breathing.

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.