Tuesday, January 29, 2008

Round Up: Because Too Many Things Are Racing Through My Mind

Monday's platelet count was 104. This is good news because I dropped another 10 mg of prednisone the previous Friday when my count was 100 and I typically lose platelets over the weekend. This time I made a few. I also began treatment again and had an Avastin infusion along with my IV Ig. On Thursday, I will get Abraxane with IV Ig. I am now going to the doctor only two times a week. It's a huge relief and I continue to remind myself that things are going in the right direction.

Informed Cancer Patient
Thanks to a grant from the
YSC Northern New Jersey Chapter, I will be attending the 8th Annual Conference for Young Women Affected by Breast Cancer next month. I am really looking forward to it and not just because the weather is going to be lot nicer in Jacksonville, Florida than it is here. This conference is a vital informational and emotional resource for young women who have experienced breast cancer. I find it invigorating and inspiring. It gives me hope for everyone living with cancer. Plus, there are friends to reconnect with and wine to be imbibed. Duh.

A couple of women I love could use some prayers for strength, courage and hope. If you've got them, please pass them along to:
  • My friend Sal, whom I met in the UK. She and her husband are a handsome pair of ballroom dancers as well as generous hosts. They opened their home to me and My Love on our last night in the UK and sent us back to the US with our bellies bulging from a proper English breakfast. Sal has been going toe-to-toe with bone mets for awhile and has recently been admitted to the hospital.
  • My friend Charnette, whom I see every year at the YSC conference. This week, she started whole brain radiation. She is vivacious, courageous, knows the power of hope and is focused on her new assault on cancer.
Consider yourself rounded up.

Friday, January 25, 2008

I Got a 100

Today's platelet count: 100! I am thrilled about this not only because it's such a nice big number, but also because up until today, my recovery was sluggish and definitely unsatisfying. This is my first big boost in numbers, as this is up from 86 platelets on Wednesday. I feel like I'm making real progress now.

With regard to the prednisone, today I stepped down from 40 mg/day to 30 mg/day. Having started at 120 mg/day, this sounds great. But, I think my previously posted photos from the rooster massacre paint a pretty ugly picture of what this drug can do to a body. Which brings me to my blood pressure. It has come back out of a dangerous range into a place that is still high but, well, not dangerously high. Getting off prednisone cannot come soon enough.

My Oncologist would like me to start chemo again on Monday. I am all for it. I have been off it far longer than on it since I switched regimens last fall. I need to get back to the program.

However, there is one complicating factor: the addition of a treating oncologist closer to home who will work with and at My Oncologist's direction. The quality-of-life benefits of this move are plenty, although I am terrified to be away from My Oncologist and his amazing nursing team. They are beyond compare and they are friends. The thought of seeing them every six weeks or whatever we decide makes me sad and nervous.

Further, the doctor I have chosen to work with seems extremely capable. Heaven knows I wouldn't have chosen him otherwise. He is smart, makes well thought out and rationale arguments for his opinions, and his own ideas on how I should proceed. See where this is going? He is not exactly on the same page as My Oncologist with regard to beginning treatment again. He is resolute in solving the platelet issue before restarting treatment. Of course, My Oncologist wants the platelet issue resolved as well. But, he also knows my full history and is not being cavalier about getting me back on chemo.

Ugh. I asked for another opinion, and I got one. I have now asked the person who has been directing my care -- quite amazingly -- for over six years to deal with another physician in order to provide this care. This is a complication of my own creation.

Both physicians said to me that they do this type of arrangement often, and that there are no egos involved. They are both committed to the best care of the patient. So, they will talk and hopefully come Monday the pages will be aligned. Then, I will begin making appointments for treatment at a new office, with a new doctor, and a new nursing team.

I'd say managing life with cancer is complicated. But I don't think "complicated" is a descriptor that even skims the surface of the reality.

Thursday, January 24, 2008

Roosters: Massacred!

Are you aware that video game console manuals contain warnings that say too much game play can cause seizures? All that over stimulation that can mess with your head. I think a similar warning should have accompanied my kitchen wallpaper. Here it is in all its glory:

This questionable home decorating choice was not a border or an accent under a chair rail. Nope. Floor-to-ceiling and wall-to-wall. That's how much roosters were beloved by the previous owners. Gaze upon them for as long as you can take it; because now, they are gone! Thanks to this crew:

A few of us really took to using the paper tiger, spraying Dif and pulling down satisfyingly large pieces of paper. Then we got bored. Going up in high or cramped spots just wasn't working for us. Thank goodness one sister seemed intent on tackling the tough stuff.

We did supervise her, though. Don't you worry about that.

Oh, and please note: the walls are painted blue beneath the wallpaper. What's up with that?

Friday, January 18, 2008

And You All Thought I Was Unstable

According to my scan reports, however, I am stable. No disease progression anywhere and regression of the brain lesion that was gamma knifed in October. I am elated!

In other news, my platelets are now hovering in the 80s. Today they are 86. I continue IV Ig three times a week for now, but am weaning off prednisone. The prednisone is contributing to high blood pressure, for which I am now taking medication, and a delicious case of thrush, for which I am taking medication and I will not hyperlink to for your dining comfort. I am also taking medication to get some of the prednisone bloat off of me as I am now more than a simple bottle of champagne, I am a magnum.

I will meet with My Oncologist on Monday and start working on a new treatment plan. More to follow on this.

In the meantime, The Sisters are descending upon my home tonight for the rooster massacre. It's going to be a good weekend.

Wednesday, January 16, 2008

Scan Day!

Tomorrow is scan day. Please cast any and all extra positive thoughts, influence and prayers this way.

Many thanks for your attention to this matter.

With Kind Regards,

The Disabled

Friday, January 11, 2008

Like Perrier Jouët, Indubitably

I am retaining so much fluid I can almost hear myself sloshing when I move. There is so much gas inside me I can feel it pressing against my skin for release.

I have become a
bottle of champagne.

Sunday, January 6, 2008

Road Rash

The Tuesday before Thanksgiving, the day before My Boys and I were to drive to North Carolina to spend the holiday with My Love's family, I went to The Oncologist's office for treatment as per usual. And my platelets were six. What followed, I'm not even going to go into detail on. But if you're savvy, you know it involved transfusions, IV Ig and an F-load of prednisone.

And it's still going on.

However, as previously mentioned in this sad, aimless and severely neglected blog, I did learn a few things in the U.K. One of them being, try as I may, I really, really, most honest-to-goodliness, cannot do everything. As much as I chafe at the very thought of not being able to do all I wish, to the standard of performance I expect, at every single given moment I expect it, there is a small portion of my stubborn, willful, driven brain that has the capacity to recognize the facts. The facts being:

  1. I'm getting creamed and I am beat tired.
  2. I need to get this platelet thing under control properly and stop expecting to succeed in gaining that control by forcing My Oncologist's plan of action into my already overcrowded schedule.
  3. I need to take the opportunity to heal and give myself permission to take the time I need to regain my strength and sanity without undue burden from other obligations and stressors that detract from my healing.

In short, for the first time since my mastectomy, I'm taking a break.

A friend at work who heard me out on this put it this way: "Well, you know what they say. Let go or get dragged." She pretty much nailed how I had been feeling. Dragged by my illness. Dragged by the platelet complication -- again. With the addition of these things to what is typically called life, I felt I was being dragged by a semi that had ripped me off my feet and yanked me bouncing and banging down a gravel-covered country lane at a supremely excess speed.

So, brilliant me, I let go.

I've been on temporary disability since December 1. I expected to be back at work right after the New Year. But I'm not. My platelets have rebounded and I am in a treatable range. But they are not stable. So, I continue IV Ig three times a week and I am on a desperately distressing level of prednisone. (Distressing for me, you understand, right? My Oncologist seems to be handling it just fine.) I am hoping this is my week. When my platelets boost, we talk about starting chemo again, and we nudge the prednisone down a little more.

Some other positive things:

  • I have an appointment with an oncologist who is about 45 minutes from home whom I am hoping will agree to consult with My Oncologist as part of my already established healthcare team and provide me IV Ig treatments instead of me bombing up and down the highway three times a week.
  • My roid rages have been significantly curtailed in the absence of my usual stress level. Oh, be assured, I am a nutter and can still rage with great ferocity. But, I am a much calmer person than I was in the previous go 'round. No other comparisons allowed. If I were being graded against truly sane people, I'd screw up the whole calm bell curve thing.
  • I have dug out from a huge avalanche of household obligations and gotten myself organized like I haven't been personally organized in years. I even reinstated the service of my Filofax, which I love and regret ever putting in a dark, desk drawer. Electronics are not all they pretend to be with their shiny metal sparkly lure. Paper, and leather, and ink are so much more tactile, personal and satisfying.
  • Getting ready for Christmas was fun! For the most part. OK, once I allowed myself to enjoy it. Having time off meant I didn't have to cram in shopping, or decorating. Or, if things didn't go my way or I couldn't find something, it wasn't such a big deal because I always had time to try again the next day, or take the time to go elsewhere. I wasn't as rushed or as stressed about things.
  • I have baked and cooked. I forgot that these are things I enjoy. So I did them! The Kid and I made four different kinds of cookies for Christmas and we had a blast doing it. I've enjoyed cooking for My Boys and even have leftovers in the refrigerator. I'm afraid I may have to throw things out. I can't remember the last time this house had too much food.
  • My Love and I have conquered more of our home thanks to my prednisone and his oft tried, well worn patience. The beer can collection, keepsakes, memorabilia, children's toys and other items that rightly belong in the attic have been evicted from our guest room and put in the attic. We now have a place for our guests to stay comfortably. Further, the living room portion our house, which I had taken to calling the indoor shed, has also been emptied. My Love has ripped down the garish pink wallpaper, is putting lights in the ceiling and is considering wall colors. When he is done, we will have a game room. Or, as My Love wishes to call it, a man room. Whatever.
  • My sisters and I have scheduled a rooster massacre. How I have longed for the death of my rooster kitchen and all of its dizzying, blue, chickenwire roosteriness! Soon it will be gone and the walls will radiate a peaceful sage green and a tiny bit more calmness will settle into our home.
  • Best of all, despite being off treatment for more than a month, my tumor marker has taken a significant dip. A tumor marker is sort of a monitoring device. It assesses the amount of a particular protein that tumor cells shed. So, theoretically, if there is a lot of this protein, then tumor cells are likely active. Or abundant. Or something that means they are up to no good. My markers are usually pretty accurate for activity. Apparently they had been up in the 80s recently. The latest report I have says they are now at 39, which is in a normal range. Nice.

There's more, you know? I think I just need to stop for a bit. I think I got quite a bit out.